Thirteen Blessings

The Art of Becoming a Missing Person, AKA where have I been...

2018-10-27T14:59:00.000-07:00

Wow...over 2 years.

How can that happen?

I started with the death of my laptop...then a life in crisis...then walking away from almost everything I did publicly online.

Two years ago I was seriously struggling - spiritually, physically, emotionally, mentally.

Today I am seriously struggling - spiritually, physically, emotionally and mentally.

But I am not in the same place I was 2 years ago. In some ways I'm in a better place, but in some ways not. Just different I guess.

Why am I back? I'm not really sure. I know that writing for me is therapeutic in some ways. But for one thing, I finally have a laptop again. Sitting at a computer for any length of time is just not an option for me anymore (I'll explain that in a minute). I sometimes feel guilty for leaving my readers hanging after posts about depression, health problems, adoption and other struggles....but most of the time I've just not thought about it much.

Actually I'm not sure I'm back. That depends on if anyone reads this! If anyone comments... If anyone really cares.

There's too much that has happened in the last two years to actually talk about it, but I can share a few highlights.

2017:
January - just couldn't go on having a home business
March - sold Snap-EZ to my seamstress, Stephanie, also started taking anti-depressents
August - Began weaning off anti-depressants, too many side effects (gained back all 70 pounds that took me 4 years to lose, wahhh)
September|October - 6 week sinus infection. 4th antibiotic (one for the plague, literally!) finally worked
November - Reuben starts a courtship
December - took my last anti-depressant

2018:
January - Our family at home began attending the church we used to attend (1996 - 2004)
- also diagnosed with allergic asthma - my lung function was at 70%! Yikes!
- Esther diagnosed with Retina Edema, 13 trips to Children's Hospital in 6 months
February - My knee permanent injury acts up again, causing me to learn how to live with using a cane
April - Enrolled Esther and Christy at our local public school special ed program, 1/2 days
- Reuben gets engaged, starts a new job, working swing shift
- steroid injection in knee - only helps for less than 2 weeks
June - Diagnosed with Fibromyalgia
- Rebekah and Rachel move out to try living away from home (they are 20 & 23) at the time
July - We put the house on the market, hoping to move to a one level home with less yard/square footage to maintain
August - Synvis injection in my knee - still working great! My cane is retired indefinitely
- Reuben's fiance calls off the engagement/courtship
August - Christy & Esther enrolled full time in special ed, other school-aged children enrolled at the parent partnership program (homeshooling, but children take classes 2 - 3 days a week)
September - Rebekah moves back
October - Reuben gives notice, goes back to old job after being given an offer he can't refuse

Of course there are so many things that this list leaves out, but as you can see from this small fly over, my life today is very different from what it was a few years ago. Chronic pain, grief, depression and stress change a person. More days than not, I am barely able to function enough to get the children ready for school and help with homework. Anything beyond that is practically a miracle now.

If you are like me, and most people, you know practically nothing about fibromyalgia. I have learned so much since my diagnosis. I can look back and see that my journey through fibro started 3 years ago. For most people, fibro is triggered by something that happens that is traumatic - a car accident, the death of a loved one, the onset of chronic pain etc. For me it was a combination of several life events - the suicide of a friend, the diagnosis of a fatal birth defect in and subsequent death of my daughter's first son, injuring my back, and the onset of severe health problems. Overtime, my health (emotional, physical and spiritual) began to decline.

My Daily Life Saving Stuff

So where am I today? I have been able to lessen some of my fibro symptoms through supplements, CBD oil, becoming close friends with my heating pad, the use of many pillows (and now my favorite - the U shaped body pillow), and a product called "Beauty Sleep" that allows me to actually sleep most nights now. I still have bad days where pain and brain fog rob me of the ability to function above a very basic, survival mode. But I also have good days - where I actually am able to fold some laundry/wash some dishes/go shopping....I'm still learning. I'm still struggling. I'm still coming to grips with this diagnosis and it's long term repercussions for me and my family.

My latest and greatest Granddaughter!

I'm also planning to write a book - maybe more than one - but I'm going to start by writing about a family vacation that we took back in 1999 - the last road trip we ever took as a family. I've decided on a title:

Looking Up Washington's Nose: A Monumental Vacation

This vacation included the stomach flu hitting everyone in the first 6 hours, an engine fire, getting jack-knifed, a tornado, a flash flood, dropping the trailer, and more. It's an epic tale of survival and making memories.

one of my therapy kittens, Prim

So, does anyone want to know more? If I continue this blog, I'm sure I will share about life with fibromyalgia. I will also share life with special needs, wonderful grand-kids, children achieving important stages in life, and how I'm coping - the hard times and the times I rise above. And, of course, I might include some snippets from the book as I progress!

Please comment below if you want to see me blogging again!

Baby Steps

2016-09-02T15:28:00.000-07:00

Since my last post I have made steady progress in many ways. But it has definitely been baby steps.

There have been other times that I have headed in the wrong direction, and came back and got on track. But in the past the road back to living with having my priorities straight was not a long road. Things seemed to fall back into place quite easily. Not this time.

It's almost like waking up from a long, bad dream this time. Where did that year go? It was almost exactly a year from Matthew's trisomy 18 diagnosis when Jessica was 20 weeks along (which marks the beginning of my falling away), until I wrote my last blog post. Almost a year of struggling to make it through each day. Days and weeks of being in bed most of the time, followed by weeks and months or struggling through days and nights of physical pain.

So, spiritually, I turned the corner at the beginning of May. But, physically, I was still dealing with chronic back pain and the lovely friends that came along with that - fatigue, lethargy, psychological and mental changes, difficulty sleeping. That meant that I just couldn't flip a switch and suddenly be everything I needed/wanted to be!

My first baby steps were to think through my priorities. Number one was re-connecting with God. That meant having my quiet time every morning. That is easier said than done when you have nine children still living at home. Waking up at a decent hour requires that I get a decent amount of sleep. That is something that is often out of my control! With Christy's needs for tube feeding and oxygen at night, getting her to bed take 30 minutes even with help. And then there is my four year old who seemed to think that crawling into bed with mommy during the night was hunky dory, and I was usually too tired to fight it. But, I needed to still make meeting with God in my quiet place the number one priority of each day. So I did...I refused to leave my bedroom until I had done this, even if it meant not leaving my bedroom until 10 am....or even noon!

My number two priority had to become me. I couldn't be the wife and mother I needed to be if I was unwell. So, for me, that meant that I needed to make sure that I took my supplements/prescriptions every morning and every night, as well as my ointments, creams and magnesium spray. The second part of that was doing my physical therapy - but this proved to be the hardest to control! It is so stinking hard to make yourself to any form of exercise when it took all your energy just to get out of bed, have my quiet time and take my pills! Over the past three months I have had more days where I give up and walk out my bedroom door without doing my exercises than the days when I conquered that mountain. But, overall, I was doing it far more often than I had in months! The last part of taking care of myself was to eat right. I had gone sugar and gluten free after I had gotten the diagnosis of arthritis, and I needed to stick to that! Also, in June I started Whole 30 to further reduce inflammation...more on that in a later post, maybe!

Some days, that was it...that was all I could do. Some days, I would go back to bed. But they were getting fewer and farther between as the days/weeks went by.

About two weeks after my spiritual reawakening, I knew I was in over my head. I was overwhelmed every day by all that came screaming to my attention the moment I left my bedroom. Nearly a year of pain and struggle means nearly a year of just surviving...I mean barely surviving. Anything beyond ensuring that my children were fed and dressed were beyond my ability to handle. And even those things were usually delegated, but they remained my responsibility. And, if you are a mother, you know that delegating something doesn't always means it's easier...sometimes it's easier to just do it myself...if I was capable to do it, which in more and more ways I just couldn't do it - I got to where I was told I was not to lift Christy...and something like changing her diaper could even bring about hours of back pain!

It didn't take long before I knew I was literally in over my head. My heart and my mind screamed to run and hide. So many areas of my home were in disarray. So many things were being left undone, or only partially done. Yes, I have older children living at home, but they had so many ways that they were having to step in and do the work that I should be doing. Changing diapers on three girls (yes, potty training Carese has not been something I have been able to do until just this summer, and even now it's only part time - she is resistant to this for some reason!), making meals for 11 people every day, creating Christy's special meals three times and day and feeding her, doing the grocery shopping, doing the laundry. For so long I was literally unable to do any housework at all! One time I tried washing dishes....ended up with serious debilitating pain for two days....yeah, not worth it! Speaking of dishes...washing dishes in our home is a full time job, which had to be done by one of the older children as well.

So there I was, with a mental list a mile long of all the things that needed to be tended to around our home, and little ones who were quite literally screaming for my attention (they miss having a mom that can actually get out of bed!). And then there is the behavior that inevitably rears it's ugly head when mom hasn't been present to work on the hearts and minds of her children - selfishness, laziness, fault finding...the list goes on. Some days I would come out of my bedroom and have what I like to call "fires to put out" - you know, conflicts between children or outright sinful behavior, or the more subtle ones where they try to make you think they have done what they should have, when they really haven't. I tell you - it was enough to make me want to run and hide (notice a theme here???).

Well, running away was just not an option. Over the years I've heard of the occasional mother of many who just up and leaves her family. I tell you, I now understand. I do not condone, but I understand. But, I knew that God had personally called me to be the mother of these children, and the wife to my husband. I knew I couldn't quit. But I also knew I was just not up to facing this on my own.

So, I reach out for help.

I called my pastor and said I needed help. Specifically, I needed counseling. I was floundering. I had thoughts that I needed help conquering. He found another mom in our church who was qualified and trained in lay counseling. I seemed preposterous to even need it, but need it I did. I needed someone to look in from the outside and help me to figure out what I needed to focus on, and what I needed to ignore.

She gave me permission to have the priorities that I had put in place - God first, my health next, and then my family/home. That was such a huge relief! I could count any day a success if I kept those priorities straight, even if that day meant my only contribution outside of my bedroom was successfully making it to my recliner and to be present to "put out fires."

I met with her once a week at first. In person a few times, but then it was easier (and better for my family) to connect over the phone. Now it's about every other week or so, unless something comes up that I need help to figure out. But that lifeline has been such a HUGE part of my progess! If anyone reading my blog post takes away one thing, it is this....if you are overwhelmed, get help!! Do not stick it out, listening to your heart tell you lies like, "you can't do this," "it's not worth it." Get help. Call you pastor, call up a Christian Counselor and find someone qualified to talk to.

One of the biggest ways that talking to her helped is that I was finally able to talk about some of the things that had been so devastating to me. Things about the day of Matthew's birth(death), things about my friend, Dian, who had committed suicide (she lost the battle against undiagnosed health issues and severe sleep deprivation...two things I could relate to). Being able to voice my thoughts where I wouldn't bring more pain to those I love was so good for me! And she gave me permission to be sad. That grief was a normal process. After that, most days, thinking of Matthew or Diane was much easier...still hard and it still hurt, but it no longer tore at my soul.

I found that when I couldn't go on, I couldn't tell those close to me. Admitting even having those thoughts was admitting failure. Just putting my thoughts into words was so incredibly hard. But once I did, and she helped me to fight those thoughts with the truth of scripture, they lost their power.

My thoughts of "I can't do this" became "I can do all things through CHRIST who strengthens me."

My thoughts of "No one cares about me" became "Just as a father has compassion on his children, So the LORD has compassion on those who fear Him. For He Himself knows our frame; He is mindful that we are but dust."

My thoughts of "It's not worth it" became "Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ"

(yes, those are suicidal thoughts...there, I said it...I would never take my life, but my deceitful heart has been whispering these awful things to me in my darkest moments, even since my spiritual reawakening - if you have thoughts like this, you need to reach out and get help NOW!)

I needed to battle my own thoughts with the truth of scripture. I started a thoughts diary, as a journal of scripture I can use to battle my thoughts. I was able to see improvements. Over time I would be able to recognize these thoughts as lies, and counter then with scripture and prayer sooner.

OH - don't let me overlook that one. I needed to redevelop the habit of going straight to the Throne of my Savior when those thoughts came crashing it. I've heard the phrase "crying out to God" and that the Holy Spirit interprets our groanings....but until this year, I did not truly get it. Now I do. I can not count the times that I have literally cried out to God in my misery. Tears flowing, sobs wracking....crying out for strength to make it. Physical pain, when chronic, changes you. I can have great days, even great weeks now, and then wham, something happens and I am wracked with pain and just as fast, I am right back to depressed and freaked out. This happened three times this week! I can even have a great day, but then be dealing with sudden pain at night and I am thrown into that terrible place of lies and thoughts of depression. But, now, I (usually) turn to God and cry out for help. And He gives it...not that my pain suddenly goes away, but my thoughts are turned to Him, and I can not have thoughts born from lies in my mind while crying out to God. I have a choice in those moments...to have faith or to fear. Fear breeds anxiety and terror. Faith brings peace.

So, where am I today? I am down from 6 prescriptions to only two, which I only take occasionally (a muscle relaxant and Tylenol 3). My blood pressure is down from averaging 150/90 to averaging 125/65! I have lost 30 pounds since February. I have more good days than bad. I actually wake up before my alarm most mornings, which is set at 7:30 now. I don't take naps, at least it is rare. I have been the one to get Christy dressed and in her braces everyday this week! I have been the one to put her to bed more nights than not this week. I am continuing to research the things I deal with, like chronic pain, daily headaches...and am finding new things to try out.

One of which is CBD oil, which is made from commercially produced hemp, which is legal in all 50 states. It has been the most effective form of continued pain relief for me. Two dropper-fuls, twice a day, and a topical massage oil applied to my problem area, and most days I have no back pain, unless I do something to aggravate it. But even then, it no longer ramps up into hours and days of pain. If stop doing whatever it is that I'm doing that I shouldn't do, ice my back, apply heat and rest, my back calms down in just a matter or an hour or two, maybe even less! If you have chronic pain or illness, I highly recommend that you research this and maybe give it a try! You can even order right on Amazon!

The other things I do to help with my back problems is weekly acupuncture, every other week medical massage and chiropractic care. Over the summer I was doing those things twice as often, but that meant I was away from home two afternoons a week. As I improved I was able to spread it out so that I'm only away one day a week!

Over the last two months I was suffering from terrible pressure headaches every day. While a caffeine pill would take care of it, it became obvious that it was not normal. I did some research and found some things, but the best thing I did was to go get my blood tested after consulting with my doctor. I found out , ferritin levels were seriously low, which also explained a few other things I had developed....so I started taking desiccated liver capsules. I share that to say, don't let something like that just go on, week after week! Get in to see you doctor and get some tests done. I don't always do what my doctor advises, but it is so helpful to know what is wrong so I can work to correct it!

But I saved the best thing for the last!!!

On August 15, Asa Robert Langford made his grand entrance! I was able to be there, manning the camera and watching the indescribable joy as he was born and took his first breath. Today they call a baby born after a pregnancy or infant loss a "Rainbow Baby." So Asa is a Rainbow Baby (Click to see professional photos from his birth). Until you have lost a baby, you never fully grasp the incredible gift that life is. I have also had the privilege to be able to help Jessica care for him (he's asleep in my arms right now!!). He is so precious. Such a rich blessing from our Heavenly Father.

I hope what I have shared has helped someone. It is such a struggle. Chronic pain/illness is something you just can't understand until you experience it. I hope that in the future I will be compassionate to those I meet who are dealing with such difficult trials. But I have also learned that people who deal with this, are more likely to not go out...I have only gone to church a handful of times this year. So, please, take a minute to think of someone in your life that you have lost touch with because they have fallen to a chronic health problem. Give them a call, ask them how you can help. Did you know that the population of people who deal with chronic pain or illness have a super high suicide rate? I can tell you first hand, that even just asking "how can I pray for you" will mean the world to them! Just let them know you care!!! I can count on one hand the number of people in my life who have actually asked me that question. I had no idea....

But let me end on this note. I now have hope. I have fought many battles this year, and some I have lost, but most of those were before I came running back to God. As long as I keep holding tight to His loving hand, I know that I will keep winning the battles. I may still have those very dark difficult moments in the middle of the night, but I know that if I keep taking control of my thoughts in His power, I will continue to have victory and be able to bring glory to God in my life.

2 Cor 10:5 - We demolish arguments and every pretension that sets itself up against the knowledge of God, and we take captive every thought to make it obedient to Christ.

Phil 4:8 - Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

And, just to make you smile...I got these amazing photos, while he was awake, when he was just 10 days old!

Into Darkness (and Back out by Grace)

2016-06-15T15:06:00.000-07:00

This is a letter of sorts that I wrote just over a month ago. I have waited to post is until I had the opportunity to give it to each of my immediate family members and interact with them about it. I also wanted to wait and see where God was leading me and know that this was really the life changer that I thought it was. The first part is a kind of "cover letter" explaining why I wrote this and was especially important when I was giving this to people who I love and from whom I had hidden so much from. So, without further explanation, here it is:

This is my testimony of sorts, relating to the past few years as I reeled and staggered through trials and hardships and turned my back on God, which landed me in a world of darkness, despair and depression. How I attempted to cope erroneously, causing me to flounder again, sinking into the blackness.

I share this with you because I have lived the secret life of darkness in front of you and I am sure you sensed that something was terribly wrong with me. I allowed my sin to cause pain to those I love, and to make our home unpleasant and unproductive. I am grieved that I have caused you pain and sinned against you so many times, lashing out in anger and pain and even pointing out your faults and sins when mine were so great they were causing me to drown, as I pulled you with me. I am so sorry for being such a poor example to you. I will be praying that God will use what you have witnessed in me to draw you closer to Him. That He will enable you to avoid going down this same road in your lifetime.

Please forgive me. Please pray for me. Please do not let the hurts I have inflicted on you to fester, but bring them to God to find healing and peace.

My Journey Into Darkness and Out Again by Grace

I am writing this as a testimony to what I have come to understand as a huge shortcoming in my life and how God, in His amazing grace and patience waited patiently for me while I foolishly stumbled into the darkest valley of my life, until I finally was able to hear His voice and follow His call to find my way back into His light.

I believe this began long ago, but this sin/foolishness took a long time to bear the ugly fruit that overcame me this past year. I did not understand that I even held the erroneous belief because it was so subtle.

I have face trials and hardships in my life by reaffirming my beliefs about God, who He is, what He desires of me and what His promises are. While that is correct, it is missing the most critical aspect of being a child of God. But I'm getting ahead of myself.

For years I was able to “get by” and not even realize that I held this erroneous beliefs, until the past year or so, with multiple trials and afflictions, when I came face to face with my foolishness. I reached a place of darkness, pain and despair that I have never reached before. My pain was so great that I recoiled, reeled...staggered under it. The beginning of the slide into darkness began in the winter of 2013. I began to allow painful situations to fest. I did not come to God to seek understanding of His purpose for the trials in my life. As time went by more trials and disappointments and pain were added, piling up, but I would stuff my pain and confusion and “try not to think about it.”

This began a process of drifting away from God. I allowed my quiet time and prayer to become more infrequent and more something to do and a meeting of myself with God. I was becoming more and more inwardly focused. The more inwardly focused I became, the more responsibilities I gave up on, the more I saw myself failing as a wife, mother and friend. The feelings of failure led to feelings of guilt until I began to further withdraw into my self to avoid the guilt, pain, and shame. Even going to church was more that I could face more often than not.

All of this withdrawing was well in place when, in May, I got word that a very dear friend, whom I had lost touch with in recent years, had committed suicide, and in ube, we received the diagnosis that my grandson, Matthew, has Trisomy 18 and was not expected to live after birth, if he lived that long. That began a time of completely shutting down...emotionally and spiritually. This also marked the beginning of physical and medical difficulties for m (chronic back pain, repeated sinus infections, tooth abstractions and stomach problems). Adding to all of that Christy was diagnosed with sleep apnea that required her to have oxygen via a nasal cannula while she slept. This let to late nights and subsequently to sleep deprivation for me.

Instead of running to God and pleading for His grace and strength, I shut down, turned inward, began escaping reality in whatever way I could find. I believe that much of my physical hardships were brought on or increased by my stuffing my problems instead of clinging to God and admitting my inadequacy.

IN August I suffered yet another sinus infection and also had to have a tooth removed in September, and ended up with a jaw infection. I spent entire days in my bedroom, shutting out everyone and everything, escaping into the world of an online “sim” game. I sought comfort from strangers instead of God...sought companionship from those who would expect nothing from me..sought to escape from the pain and misery that surrounded me in the real world.

Mathew's death and birth was a turning point for me, but not in a good way. I survived those three days by focusing on what I needed to do next for Jessica and Jon. I went three days without any sleep. Witnessing the silent moments after his birth broke me. I had to leave, I nearly passed out. Alone I cried as I have never cried before. And then I went on. I did not cry out to God, I did not share my grief with anyone. I just did the next thing, even when I couldn't stop crying anytime I was alone. I sought help in the refuge of sleeping pills. Be busy or sleep was my goal each day. I recoiled, I withdrew, I was free-falling into a dark pit of despair. I reeled and staggered under the weight of this loss. The disappointment was beyond my ability to comprehend. I had to do whatever it took to escape the pain. I quit reading the Bible, I avoided prayer. Going to my place where I have my quiet time would mean facing this raw pain. I just couldn't do it. I could not even speak to another living soul of what I was going through. How the memory of that day was hitting me at odd moments, and the raw pain would come back like a knife. I began to feel fragile, as though it would take just a small thing and my tenuous hold onto reality would break. I even began to have panic attacks when anything presented itself as a crisis (big or small). My back pain grew to epic proportions and I had to seek both chiropractic help and physical therapy, but they only eased the back pain enough for me to function for a few days at a time. I began to be on muscle relaxants full time. The anti-inflammatories I had been taking shredded my stomach and I was no longer able to take those after a time.

Just before Thanksgiving I knew I needed to do something. I knew I needed help when I began to have thoughts of wanting to really escape. Run away. It was all just too much. I know I had to do something, I knew I was fragile, about to break. I felt would up so tight I was going to explode. The emotions I was holding inside were creating a pressure that was reaching a breaking point. I reached out and asked close friends to pray for me. I sought counsel from a pastor as well as friends who had or were dealing with grief. I began to read the right book. I thought I was finding the answers. I found some relief. I was no longer alone in my pain and despair. I found comfort in God's promises and reassurance in what I believed about God.

I thought I was doing the right thing and that eventually everything would work itself out and that I could find a new, healthy normal again.

But I was wrong, seriously wrong, only I didn't know it yet, not for quite a while. These coping attempts had worked for me in the past, but they were leaving me without any true relief. I felt as though God had turned His back on me. My infrequent prayers seemed to die as I uttered them. My relief was temporal and short lived. My grief and disappointments, despair and discouragement were just below the surface. Still very much there and could crash in on me at the slightest provocation and overwhelm me.

I continued to have ever increasing medical problems....High blood pressure became a constant problem, my back problems hit an all time worst, my stomach was diagnose as having erosive gastropathy (the lining of my stomach was being eroded away), and my hormones were completely wreaking havoc on me. The reality of my friend's suicide began to torment my dreams, I'd even think I saw her here and there when I was out of the house running errands. I was finding less comfort in the books that I was reading and felt a wall between me and any friends. I couldn't speak of my heartache without feeling that I would be engulfed and overcome if I even dared to voice my pain.. My physical problems created crises that put me in the hospital twice. I asked people to pray for me, yet I could not pray.

The walls I had erected to protect myself were firmly back in place. My quiet times once again decreased and my escaping and stuffing instincts returned, only stronger now.

Things began to improve physically as I began to get to the root of a few of my problems and get the treatments and medications I need to address them. But spiritually and emotionally things were not improving. I was able to get an injection in my back that relieved me of all back pain for eight weeks and I began to feel like I could actually do things again and began to tackle home projects that had been pushed to back burners for months. But nothing was taking away the pressure that was building inside of me. It would show up in bursts of anger, in an underlying state of being easily irritated. I was unable to find joy in anything. At the end of April, I attended a new Bible Study and while there, amidst friends, I felt like a foreigner. Like the Bible was not mine, that prayer was something foreign to me. I felt out of place and like a hypocrite. I no longer belonged in a Bible Study. My back pain began to come back during that week, so I made an appointment with the Pain Clinic for the day after we came home from Colorado.

The next day came my big trip to Colorado with two of our children who were competing at the national level of Bible Quizzing. Somehow everything came together to enable me to go with them. I was feeling quite healthy and I seemed to be able to get things together enough at home to cover the care of the children who remained home. The first night of the conference I attended the worship service and the music went right into me. I couldn't sing it. I could not honestly sing those lyrics. But they revealed to me something that I had not seen before. God opened my eyes to the fact that I was in bondage, in slavery. I could not honestly sing praise to God. The theme of the conference was Galatians 4:7 and it was there right across the stage...”No longer a slave, but a Child Of God.” And the song, “No Longer Slaves” was sung and tore into my soul. I couldn't sing, all I could do was hang my head while tears coursed down my face. The words rushed through me...

You unravel me with a melody,
You surround me with a song of deliverance from my enemies
'Til all my fears are gone...
I'm no longer a slave to fear, I am a child of God.
From my mother's womb You have chosen me,
Love has called my name, I've been born again into Your family,
Your blood flow through my veins...
I'm no longer a slave to fear, I am a Child of God!
I am surrounded by the arms of the Father,
I am surrounded by songs of deliverance,
{I've} been liberated from {my} bondage...
I am a Child of God.

I knew that God was moving in me, but I couldn't quite grasp what He was showing me. Before I had time to really think it through, the service was over and I got very busy with the quizzing. Each day, this would repeat. I'd cry through the worship service, and I just knew God was trying to get me to see, but I just couldn't. I'd leave each day without answers. Saturday night I stayed up really late and got to share some of my struggles with another mother there. But I knew that I was only sharing that I was in a dark place, that I had railed miserably and had turned my back on God....that I had reeled, staggered under the grief. She said she would pray for me. The next day it was the day we went home. Busy long day of traveling.

The next day I went to my Bible Study (the first one I've attended in over 4 years). At the end I shared with them that I knew God was trying to show me something, and that I had been through the hardest year of my life and had failed. I asked that they would pray that I would be able to find time to be quiet before the Lord and see what He was trying to show me. I asked them to pray but once again I did not pray myself.

I went to the Pain Clinic that afternoon and they said that I could have another injection since it had worked for two months, that I might find longer relief with a second one. I was able to make an appointment for another SI injection for the very next day!

I didn't have to wait long for that answer. That very evening when I came home I went straight to my bedroom. I didn't even want to eat dinner. I grabbed my notebook and a pen and began to pray, and cry and write. And then it dawned on me...I finally heard what God was trying to tell me, to teach me.

I needed Him. I needed to come to Him broken, empty and worthless. I had to admit defeat. I had to embrace the fact that I had turned to works to save me from my trials and heartache. I had been attempting to fix myself. My faith was in my faith, my strength was depending on the strength of my convictions. I had missed the most critical aspect of being a child of God...God Himself. I had to understand and embrace the fact that I am completely and utterly unable to do anything without His enabling, and that His enablings only come when I have come to Him, empty and broken and humble and seek His face, His grace. I had only prayed at the end of my efforts, like He was the last resort, only to go to when all other efforts had failed. I only sough His help to fill the gaps left from my works.

But these coping mechanisms were just that, mechanisms. And they were useless to carry me through the severe trials. I had failed God.

I opened my heart and soul and cried out to God. I wrote even as I cried and prayed, not even looking at the page. I confessed my sins of being self centered and self righteous. I asked Him to forgive me for turning my back on Him. I beseeched Jesus to teach me to truly become like Him. I confessed my sin of daring to blame others for the mess I had become. I confessed to sinning like Peter and taking my eyes off my Savior and giving into the waves of fear and doubt and sinking into the blackest of oceans. I confessed that I had listened to my deceitful and arrogant heart and had walked astray. I begged God to teach me to cling to Him and Him alone. To free me from the bondage to fear, and my slavery to sin. I begged Him to open my eyes to be able to see myself as He sees me. To see my sins so that I could confess them.

Then I looked up scripture that spoke of comfort and peace (the idea just came to me then). I knew I needed both and that I could only find them in Christ, and only as a gift from God, not of my own doing. I used the scripture to pray...I begged Him to create in me a clean heart, a deep abiding love for Him, a passion to serve Him in all I do, to take away my arrogance and pride and self-centeredness, to teach me to be others minded and selfless, to rescue me, to create in me the instinct to run to Him when facing trials, to enable me to sing His praise and to worship Him in truth, to create in me an appreciation for all He has and is doing for me, to grant me an abiding, soul deep ability to know Him as my only comfort ans strength, me ever present help in trouble, to lead me beside still waters and comfort my soul, to trust that He is always with me and that His plans for me are good, and to cause me to become more like Jesus, to teach me to not allow my heart to become troubled, to not give in to hear, to enable me to put my hope in Him alone, to enable me to praise Him even in the midst of the darkest storm, to enable me to not worry about anything but to come to Him in prayer.

He began to answer my prayers even as I was writing them. I began to feel a sense of peace and to feel the heavy darkness lift.

Since my time at the conference, I have heard the song, “No Longer Slaves”, over and over again (I had never listened to the words before), as well as others, and they continued to minister to me and steer my thoughts back to God. After pouring my heart out to the Lord that night, I was beginning to find peace and feel the hope of finding the end of my journey through the darkness. But I had to return to “reality.” I told no one, I needed time for this to settle. The very next morning, I opened my Bible to where I had last been reading in the Psalms (months ago). It was Psalm 107. What I read astounded me. Right there I read what could have been written about me. Words and phrases that depicted my self inflicted free fall into darkness....

”they wandered....hungry and thirsty...soul fainted within...

then they cried out to the Lord in their trouble;

He delivered them out of their distresses...

Give thanks...For He has satisfied the thirsty soul....

There were those who dwelt in darkness and in the shadow of death,

prisoners in misery and chains.

Because they had rebelled against the words of God

and spurned the counsel of the Most High...

They stumbled and there was none to help.

Then they cried out to the Lord in their trouble;

He saved them out of their darkness and the shadow of death

And broke their bands apart.

He sent His word and healed them....

Their soul melted away in their misery,

they reeled and staggered and were at their wit's end.

Then they cried out to the Lord in their trouble

and He brought them out of their distresses.

He caused the storm to be still so that the waves of the sea were hushed,

then they were glad because they were quiet.

What also struck me was that in this passage the author stated over and over, “let them give thanks to the Lord” and then in vs 22 “...and tell of His works with joyful singing” and in vs 32 “Let them extol Him also in the congregation of the people.”

So I must not remain silent. I must share my story and what God has done for me. I was a fool and I embraced my pain as I turned my back on God. But I thank God that He was patiently waiting for the day that I would hear His voice and see His plan for me. I praise Him that He opened my eyes and ears and enabled me to hear His voice.

I have a long road ahead of me. To break the patterns and habits that led me into darkness. To confess my many sins against my family and friends. To cling to my Lord when the waves threaten to cover me again. I praise Him, for He does all things well. I will be learning to trust Him as I have never trusted Him before, and to praise Him even when I am in the midst of the storm.

Since that time I have begun to enjoy the Bible Study and have returned to my prayer journals and have been working to and asking God to remind me to come to Him when difficulties come. I still find myself trying to go it alone, but I am also running to Him as well, so I'm making strides in the right direction. My back pain was relieved for only two weeks, so I am once again dealing with back pain on a daily basis. I had my follow up appointment and the options given to me were not ones I want to pursue at this time, but through several circumstances, God has led me to try acupuncture and my first session resulted in 5 hours of no pain and lessened pain in the next few days. I will be going back regularly for a time and I'm hopeful that with my dietary changes and acupuncture I will be able to heal my back.

Here are a few more songs that have been ministering to me.

Trust In You

(Laren Daigle)

I’ve tried to win this war I confess
My hands are weary I need Your rest
Mighty Warrior, King of the fight
No matter what I face, You’re by my side

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

Truth is, You know what tomorrow brings
There’s not a day ahead You have not seen
So, in all things be my life and breath
I want what You want Lord and nothing less

You are my strength and comfort
You are my steady hand
You are my firm foundation; the rock on which I stand

Your ways are always higher
Your plans are always good
There’s not a place where I’ll go, You’ve not already stood

When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You!

I will trust in You!

Yet I will Praise

I will praise You Lord my God
Even in my brokenness
I will praise You Lord
I will praise You Lord my God
Even in my desperation
I will praise You Lord

And I can't understand
All that You allow
I just can't see the reason
But my life is in Your hands
And though I cannot see You
I choose to trust You

Even when my heart is torn I will praise (trust) You Lord
Even when I feel deserted I will praise (trust) You Lord
Even in my darkest valley I will praise (trust) You Lord
And when my world is shattered and it seems all hope is gone
Yet I will praise You Lord

I will trust You Lord my God
Even in my loneliness
I will trust You Lord
I will trust You Lord my God
Even when I cannot hear You
I will trust You Lord

And I will not forget
That You hung on a cross
Lord You bled and died for me
And if I have to suffer
I know that You've been there
And I know that You're here now

Healing Begins

Ten Avenue North

So you thought you had to keep this up

All the work that you do

So we think that you're good

And you can't believe it's not enough

All the walls you built up

Are just glass on the outside

So let 'em fall down

There's freedom waiting in the sound

When you let you walls fall to the ground

We're here now

This is where the healing begins,

This is where the healing starts

When you come to where you're broken within

The light meets the dark

Afraid to let your secrets out

Everything that you hid

Can com crashing through the door now

But too scared to face all your fear

So you hide but you find

That the shame won't disappear

Sparks will fly as grace collides

With the dark inside of us

So please don't fight

This coming light

Let this blood come cover us

Hi blood can cover us

This is where the healing begins,

This is where the healing starts

When you come to where you're broken within

The light meets the dark

My Journey Out of Depression

2016-03-09T05:04:00.001-08:00

**If you saw this post already, but it seemed weird, that is because it wasn't supposed to publish yet!**
I had only collected what I wanted to share and thought I had only saved it, yikes! Well, here is the edited version!

A rose from Matthew's graveside service
placed by me on our daughter,
Johanna Marie's grave

Last December I wrote a blog post that resulted from just taking the first baby steps out of the blackest hole I have ever found myself to be in since I rededicated my life to Christ back in 1984.

Since that post I have been slowly moving in the right direction, with some setbacks. Openly sharing what God was doing in my life through difficulties brought unexpected blessings! I have people praying for me, others have shared their times in the dark places, and I have been given two books that have blessed me along with How Can I Live, by Kay Arthur. I will be putting quotes from these three books that have spoken to me in this journey throughout this post. I hope you find them helpful!

Jessica's Blog Update

These last four months have been an ongoing challenge to me in many ways. While the loss of Matthew in October has lost some of it's power, talking about or even thinking about the events surrounding his death, birth and burial will nearly always bring me to tears. I have once talked with a doctor about it's effect on my health without crying, but only once and that was quite recently. The effects of caring for a medically complex, disabled child, long term pain from my back and the emotional stresses associated with Matthew's death and it's effects on Jessica as well as the rest of my family have taken it's toll on me physically.

Just before Christmas I had a tooth abscess that required a double root canal, thankfully they were able to take care of it right away as it was only days before Christmas! We had a most wonderful Christmas! Not any photos, but everyone agreed that we had a wonderful day together as a family! The best part???? Jessica and Jon announced by way of a very cute shirt, that God had blessed them with life again! She is due with this precious life mid August and so far everything is going very well and her little one has taken up being quite active recently!

As a follow up to a previous ultrasound of my thyroid (back in June it became suddenly enlarged), it was found that the large nodules in my thyroid had grown some, even though my thyroid had been reduced in size substantially through the use of herbal tinctures and essential oils (Endo-Flex by Young Living Oils). This meant I had to have a biopsy done.

This was an unpleasant procedure, but thankfully they got a good sampling and it is benign! I do have to follow up again later this year.

Just after Christmas we purchased some cabinets with doors to store our school and therapy supplies! This was a wonderful improvement, especially after we got magnetic locks! Now everything stays put away unless a big person is helping to get it out! This has made both myself and the children who have the job of keeping the schoolroom tidy very happy!

After December my back actually got worse. Even with physical therapy and weekly chiropractic adjustments, plus anti-inflammatory topical cream and muscle relaxant, I ended up with the most crazy, shooting sciatic nerve pain! This caused quite a stir with my care providers so I got some imaging done. The imaging via X-rays and an MRI revealed that I have significant arthritis in my right SI joint as well as misalignment of my L4 that has cause arthritis to build up between L4 and L5. This was a shocker to me. But there is hope! I have researched and found that arthritis can be reversed with proper diet and exercise. Since the diagnosis 6 weeks ago I have gone sugar, gluten and grain free (sugar for 6 weeks, gluten and grain for 3 1/2 weeks)....which means I am back on the Trim Healthy Mama way of eating! So far I have lost 10 pounds. Tomorrow I will be going in to have a cortisone injection into the SI joint in hopes of reducing the inflammation in order to allow my body to heal itself.

The next adventure in my health journey was the development of high blood pressure. I am sure it is the result of the chronic back pain (chronic pain is defined as three or more months of unrelieved pain...I'm going on a year now) on top of the other emotional, spiritual and physical stresses in my life. My doctor thought it would be best to put me on a low dose of BP meds. It didn't go so well. After just three doses of a diuretic type of BP med, I ended up overnight in the hospital due to racing heart rate (100 - 120 resting) and shortness of breath. After a dozen or so cardio tests, they determined that I was right, it was a reaction to the medication. On the bright side, we now know that I am in excellent cardiovascular health! So then I was put on a beta blocker. This didn't go well either, and left me with unrelenting fatigue. After four weeks of trying to tweak the meds, and my fatigue only getting worse, I finally got the doctor to agree just last night to quit all BP meds, checking it twice a day at home, and try a supplement called Nattokinase, which was actually recommended to me for Christy as a substitute for her aspirin that she takes as a stroke preventative (we aren't giving it to her yet, I'm still researching and need to get in contact with her neurology doctor). I learned that it can be very successful at reducing elevated (not high) blood pressure, and since my BP was only elevated and not into dangerous territory, we are going to give it a try! The fatigue is already lessened today (I took a half dose yesterday, and had already been weaned off the beta blocker Metropolol last week, but was still taking Lisinopril, an ACE inhibitor whatever that means!). I have high hopes of being functional again soon!

Starting back in June, I began to have irregular menstrual cycles, even skipping some cycles. While this was not a bad thing (I have been dealing with perimenopausal symptoms for over ten years now and am hoping to be in menopause soon), it became something of a concern when starting the first of the year I began to have weeks of heavy spotting. My doctor referred me for an ultrasound (yet another medical test!) and it showed that I had a thickening of the endometrial lining (this is called Endometrial hyperplasia (EH)), and some of the endometrial cells had migrated to the uterine muscle (this is called Adenomyosis). The EH was what had the doctor concerned because if left alone, it raises my risk of cancer in a big way. Our conservative plan to deal with it was to put me on progesterone for ten days, which would stop the bleeding (but it didn't) and then when I stopped taking it, it would shed the extra lining (but it didn't). I ended up in ER with hemorrhaging. They put me back on the progesterone and doubled the dose which finally stopped the bleeding.
Another ultrasound revealed that none of that had improved things, in fact the lining was a bit thicker (normal is 10 mm, mine was 24mm). Plan B was put into effect and I underwent a non-sedated D&C (they wanted it done as soon as possible, and scheduling worked much better for a non-sedated one). While I never want to do that again and would rate the pain as an 8 even with pain meds on board, I am glad it was done and have had no bleeding since. I will be meeting with the gynecologist tomorrow for a follow up and making a plan for my going off the progesterone.

My journey is not complete yet. I still struggle. I feel fragile. It doesn't take much and that darkness threatens to come back and surround me. But I know that it is not what God has meant for me. For He says,

" Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” (Matt 11:29, 30)
and
"For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call on me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart." (Jeremiah 29:11 - 13)

And now for some family news from the past few months... but be sure to read to the end, as I saved the best for last!

Sometime around the en of January, Christy added to our excitement by somehow getting her G-Tube pulled out and not telling us about it.

She had been fussy earlier, but we could not find the cause of her discomfort until later when I was going to change her diaper and found her Mic-key Button hanging out in her shirt. Enough time had passed that we could no longer get it back in by ourselves. So Jessica came with me and helped me take her to Seattle Children's hospital. Jessica went to the house of a friend (Molly) to sleep until we were done, which wasn't until 1am

They inserted a series of smaller to larger catheters, slowly dilating the opening in the stomach, until the Mic-key Button could be reinserted. Then we all went to Molly's to sleep until morning. Christy was a lovely traveling companion and was an exemplary ER patient! She was as happy as could be except when they were putting in a new catheter!

Christy impersonating Darla from Finding Nemo

and they snuggle together!

somebody loves her daddy!
they play together....

I almost forgot - I guess Daryl thought I was getting more that my share of medical attention, so just a week after my overnight in the hospital, he ended up in the ER with kidney stones! It has been a very long time since he was admitted to the ER, over 11 years in fact!

Somewhere around January I think, the care of Esther's hair became a burden to both myself and Esther. She loves to twist her hair, but this creates dreadlocks very quickly. To keep the peace I trimmed her hair very short and we are both happy about how easy it is to care for (but sad to see it go just the same!). It has already grown out some. I am hoping that she will have outgrown her playing with her hair by the time it gets long!

At the end of February I was able to attend two women's retreats, two weekends in a row! While it was taxing physically, I so needed to go. The first was the Above Rubies Retreat at Black Lake Camp (south of Olympia, WA). I was encouraged by the teaching and by connecting with women from last year and making new friends too! The second was our church's women's retreat, and the focus was on disappointments. So much to take in there and I am still planning to take the time to go through and look up all the scripture again and read my notes.

The popcorn stitches say
"I Love You to the Moon and Back"

On a bright note, I have begun some new projects. I crocheted a doll for Carese and knit some scarves. I also made a baby blanket and finished it just last week!

Carese, 4 years ago this week!
We celebrated her birthday yesterday.

I also got glasses especially for playing the piano, and they work!!!!!!! I have not been playing the piano much at all for the past ten years, but today I tried out my new glasses and they are marvelous! I played for over an hour. I can not describe how thankful I am to be able to play without the frustration of not being able to see my hands if I was looking at the music through my bifocals....It was like seeing a best friend you haven't seen in a decade, or going home for the first time in forever, or like being able to the most favorite thing you have ever done after not being able to do it in over a decade...SWEET!!!!!

Weaving it's way through these past months is the ongoing concern over my dear niece, Andrea. For years she has been living the live of an addict. Homeless, hopeless and lost. But not forgotten. God had not forgotten, her mother certainly had not, and I had not. Her prayers were ongoing as she feared for her daughter's life, and mine as well, both for peace for Lisa and salvation for Andrea. In God's perfect timing, Andrea came home and is in the process of getting into a wonderful Christian rehab program that she will be in for two years. She has had to do much to find her way out of addiction - detox, dental surgery and more. You can read more about her journey out of addiction, and her needs at this moment. Please take a moment and follow this link to her story and how you can help. If you can't monetarily help, please share the link on your social media! Thanks!

Lastly I want to share with you a concept that Kay Arthur talks about in her book, God How Can I Live. She heard it said once that there are 5 D's: Disappointment, Discouragement, Defection, Despair, Demoralization. (I like to add a sixth, but I'll get to that in a minute).

The first one is Disappointment. When things in your life bring you disappointment, how you react to it really counts. If you react with pain, bitterness you open the door to the rest of the D's.

The second D is Discouragement. To quote Kay,
"Discouragement and disappointment are like twins. You own the door to Disappointment and you will find discouragement dashing in right behind....The cure for discouragement is encouragement. Encourage your heart by looking at your God and His promises......"

Once Disappointment and Discouragement have taken up residence in your heart, Dejection, Despair come over for a party. The more they party, the more alone you feel. The more you dwell on your problems, the more unable you become to face them.

Then you become demoralized. No ability to go on. No inspiration to continue the fight. Demoralization is extremely dangerous. In my opinion, this allows for thoughts of self harm or suicide to come in and be the life of the party too.

I've added a sixth D - Depression. The dark place where no light shines. Crying becomes a daily event. Laughter is only a memory. Friends become distant (either imagined or not). This extreme self focus becomes a vicious cycle. You are depressed, so you dwell on your problems, your problems make you depressed.

"If you are in the dark, if your spirits are sunk in gloom, do not despair, for the Lord Jesus was there. If you have fallen into misery, do not give up, because the Father's well-beloved pass through the denser darkness. Believing soul, I'd you are in the dark you are near the Kings cellars, where the well-refined wines on the lees are stored (Is 25:6). You are in the Lord's pavilion, and you may speak with Him....
Trust Him, and He will cause His light to shine on you. Lean of Him, and He well bring you out of the gloomy wilderness into the land of rest.
May God help you to lean on Him."
Beside Still Waters by C. H. Spurgeon

But there is hope! I was there. I went through the 6 D's step by step without even realizing it. It started with strained relationships, then Matthew's diagnosis, followed by physical challenges, ending with Matthew's death and birth and the physical/emotional strain of that week. Instead of turning to God and taking my thoughts captive, I gave into avoidance techniques, recoiling in pain. But God didn't leave me there. He gently led me to come back into the light of His Word and the truth of Who He IS and His great love for me. Step by step, I left those D's behind. I fall at times and snuggle up with a few of the D's, but I become aware of it quicker these days. That and I have gathered a few friends in the battle. I reached out. When I couldn't get myself to turn back to God, I reached out to friends whom I knew would help me. They have prayed for me and encouraged me in these dark days. They continue to be there for me, when other friends failed and left me to my own devices. Friends who are just friends when things are going great in your life, are not true friends. Do not dwell on that. And most of all, remember your true, heavenly, indwelling brother, Jesus, who sticks closer than a friend (Proverbs 18:24)

So dear one, if you are reading this and you are allowing the 6 D's, or any of them, to take up residence in your heart, please reach out! They love it when you shrink in to yourself and tell yourself that no one understands. I understand. There are millions who understand (just read through the Psalms...David understood!). Don't keep these aweful D's a secret. Reach out and tell someone where you are. Find help. Find that helping hand to guide you on your journey back into the light.

"If you're God's child, you will never again have just you to depend on. No, you've been blessed, right here, right now, with grace....The answer is Christ! He is with you. He is for you. In Him, you really have everything you need. You simply have not been left to yourself"
Paul David Tripp

I just love it when my three very different daily devotionals dove tail. So many times all three, or at least two of them, will deal with something that I am currently wrestling with. Only God can put things like that together. It's like He planned this, to show me that He cares so much and even something so small as two different readings in two different books on the same day with work together to minister to me!

For those of you with ongoing physical struggles...the real, day to day struggle to just physically meet your own needs, to make it to appointments, to just get out of bed, let alone get dressed. This quote from Spurgon is just for you:

This is counsel for you who are temporarily laid on the shelf. Some of God's best workers have been laid aside for long periods. Moses was forty years in the desert, doing nothing but tending sheep. One greater that Moses, our blessed Saviour, was thirty years doing- I will not say nothing, but certainly doing no public work.
When you are retired or inactive, prepare for the time when God will use you. If you are out on a shelf, do not rust; pray that the Master will polish you, so that when He uses you again you will be fully ready for the work.
While you are laid aside, pray for others that are working. He'll them and encourage them.....Spend time in prayer, that you may be fit for the Master's use.
Beside Still Waters by C. H. Spurgeon
From the devotional titled Laid Aside for a Time, based on Exodus 3:1

And From one of my favorite novels, also talking about this topic:

“It will not hurt either of you as long as you have health. And if that fails, God will provide for you in some way," said her father. "He is rich, and could give you more now if He saw that it would be good for you. Never forget that.”

― Elizabeth Payson Prentiss, Aunt Jane's Hero

Thanks for taking the time to read through yet another long blog post. I pray that your were blessed by what you have read. If you have made the journey out of depression and into the light, please share in comments so others may be encouraged that they can also make it out!

****Please, This is Not The Whole Story! This was the beginning, but God had BIG lessons to teach me, and I spiraled back down in the black hole of depression again after posting this blog post! PLEASE READ MY NEXT BLOG POST, INTO DARKNESS AND BACK BY GRACE

While everything I wrote here is true, I had avoided a true heart change and had not gone to God, Himself, for healing and restoration, that happened at the beginning of May, and this is what I wrote about in my next post (see link above).

About These Last Six Months

2015-12-13T21:50:00.000-08:00

The last six months have been the hardest six months of my life thus far. It wasn't any one thing, but there were definitely some things that have been harder than others, but even small trials seem harder to bear when there are big trials challenging you every day.

If you only want to read about the happy stuff in my life, scroll down....way down....

On the other hand, the article Your Painful Story Brings God Glory, by Laura Story, is what pushed me in the direction of sharing my struggles here. I hope that reading what I have and am going through will help someone in some way, even if this post isn't an "I've made it through this trial" kind of post. This is an "I'm in the middle of trials, but I know that God is here with me" kind of post.

In my last "real" blog post, I shared with you that Jessica and Jon had received a diagnosis that their little baby had Trisomy 18, or Edwards Syndrome. Walking this road with them has been the hardest trial in my life thus far. I watched as my precious daughter purposed to love Matthew and appreciate every day they had with him, never knowing when his last day might be. I was privileged to go with them on several of their trips to Seattle to see specialists at both the University of Washington Maternal Fetal clinic and the fetal echo-cardiograms at Seattle Children's Hospital.

Due to the generosity of a friend, they planned outings to make memories with Matthew on each trip! I was able to go to the Woodland Park Zoo and walk around Green Lake. We had lots of fun as we tried different ways of including a tiny little pajama outfit in photos to show that they were making memories of their journey with Matthew. Jessica and I were busy knitting and crocheting everywhere we went. She made the most beautiful little sweater set and blanket and I was working on some cocoons. There were highs and there were lows, good days and bad days. Sometimes I grieved for myself and the grandson that I had hoped for, other times I grieved as I watched my daughter walk through this valley.

Just over a week before they were scheduled to be induced, Jessica couldn't find Matthews heartbeat. They had a borrowed doppler so she could listen for his heartbeat each day, especially if he was not moving. They heard his heartbeat that morning, but after a nap they listened again and it was gone. They headed to the local ER to confirm and found that Matthew had passed away. Then they packed up and headed to Seattle to be induced. I joined them the following morning after a sleepless night. The induction lasted from Sunday night until just after midnight on Tuesday. She was laboring most of the time, but the labor had times of intensity as well as times of rest.

As her mother, it was so hard to see her labor in grief. As a grandmother, it was hard to know that my first grandson would be born sleeping. The silence of a labor room without a fetal monitor was profound. More profound even was the moment of his birth. As he was laid on Jessica's chest, I kept waiting for him to move, to cry, to live. But that moment never came. The intensity of this hour was nearly more than I could handle, I cried out to God to comfort them, I grieved so intensely that physically I was falling apart. I came very close to fainting, so I left the room. I did not want to draw attention to myself. Their moments and memories of Matthews time with them needed to be about them, not me. I figured that the nurses could scrape me off the floor in the hallway if needed. I was able to make my way to a bathroom far from their room and cried my heart out in wrenching sobs. I have rarely cried this hard in my life. After a time I was able to go back to their room and marvel over Mathew's beauty. His perfect little facial features, his tiny little hands. Watching them lovingly and carefully dress him and wrap him up in a soft white blanket. I stayed with them for a few hours, taking photos and listening to them and I even got to hold him for a while.

So precious, so loved, so tiny, so still.

Jessica has blogged about Matthew's birth in detail, if you want to read it go to her blog, Matthew's Life.
My sister, Lisa, lovingly made this photo collage for Jessica and Jon

Daryl came down to Seattle and arrived mid morning, and we were to drive our separate cars home, but together as I had not slept since Sunday morning and it was now Tuesday. I made plans with Sam, my daughter-in-law, and Cindy, a dear friend, to go to Jessica's apartment and do some cleaning there. In the weeks before Matthew's birth, Jessica had been sick with a fever for over a week. I wanted them to come home to a clean apartment and have dinner waiting for them there. The plan was for me to take a nap and then do the cleaning....but I was still unable to sleep and, by then, unable to stop crying. I made a call to my doctor's office and requested sleep aids, which they did prescribe for me and have been invaluable to me since then, but I only use them occasionally. I just could not make my brain shut down and when I tried to sleep, all I could think of was Jessica, Jon and Matthew and then I'd start crying again. Working was therapeutic and I was so thankful for the presence of Sam and Cindy. Talking with them was so good for me. I stuck around until Jon and Jessica arrived, then ran a few errands for them, including buying Jessica a pretty, comfy nightie to wear as well as some pajamas for me - I had found rayon pajamas on a clearance rack! It was such a blessing to me and to her as well. Then I headed home and was finally able to get some sleep. Over the next few weeks, I helped Jessica as best I could as she recovered. She had a difficult recovery due to the long, difficult labor. It was good for me to do this as it also helped me to begin to grieve as well as gave me some time away from home to rest and recover as well.

Matthew's graveside service was held soon, and he was buried just inches from where our daughter, Johanna Marie, was buried. There was something very special about God orchestrating this. That day was also very hard. To watch my daughter walk next to her husband as he carried the tiny white casket to the hole in the ground, and then later to watch as Jon and Daryl lowered the casket by hand into that deep, dark hole tore my heart.

During those months of Jessica's pregnancy, Matthew's death and birth, I struggled in many ways.

Physically I was challenged through sleep deprivation. Christy had been put on oxygen at night to support her heart and lungs as she still has sleep apnea, and the echo-cardiogram had revealed that she has an un-repaired ASD. She did not, and still does not, like wearing a nasal cannula. She would fuss and cry. Esther is very sensitive to her crying and it upset her. If I was not in the room and Christy was fussing, Esther would first go to her crib and try to comfort her, saying over and over, "it's OK, it's OK." Then she would come to my door and knock until I came out and cared for Christy. This led to my staying in their room each night until Christy fell asleep...which was invariably after 11 pm. Starting back in January, when I had been with Christy at Children's Hospital for her sedated dental work and MRI, I had aggravated my knee injury and did something to my back. After a few weeks on crutches, my knee found a new happy place, however my back did not. I mostly ignored my back pain until I couldn't stand it, then I'd go to the chiropractor and get adjusted. I was dealing with back spasms every night, I just didn't know it. I had also been struggling with what we though was an ulcer (since my ER trip the previous December), but just couldn't/wouldn't find the time to get a proper diagnosis. Add to all that the daily stresses of caring for a large family and Christy's ongoing medical challenges. Matthew's birth/death caused me to reach a physical crisis. My stomach was raw, my back was causing nearly constant pain, and I was definitely dealing with adrenal fatigue as well.

Emotionally I was into uncharted territory for me. I was a mess. On top of grief and daily stress, I was dealing with imbalanced hormones. I felt fragile. I was definitely falling into depression. I was having moments of something like panic attacks. I was coming unglued so to speak. I felt like if some new trial came, I would just break. I forgot to mention that this past summer, in August, I learned that a friend, Diane, with whom I had been extremely close for many years (but had drifted apart from her over the last 10 years or so), had committed suicide. This was definitely also an emotional stress as I was grieving the loss of a friend and had many regrets of having allowed our friendship to dissolve. We had been in contact occasionally, but hadn't connected as friends in many years. As my emotional state began to deteriorate, I began having dreams about her, and this was adding fresh grief to my already unstable emotions.

Spiritually I am also a mess. I allowed Matthew's diagnosis to derail me spiritually. It's hard to describe, but it was like I had the spiritual reaction of how a child would react to getting a shot. I recoiled. I curled into a ball and refused to come out. It is so hard to describe. It's almost like I held tight to my grief, yet ignored it. I hurt to badly I couldn't face it. It felt as though God had hurt me. I know this is not true, but that is the best way that I can describe where I was. After Matthew's death and birth, it got worse. My pain was so raw, my strength so low, that I just couldn't go there. My quiet times were few and far between, and my prayers were too. I knew I needed to reach out to God, but something inside me was not ready to let go. I think it was the beginning of November that I knew something had to be done. I made an appointment with my pastor. I shared with him my ongoing struggle to get sleep as well as my spiritual situation as best I could. I knew I needed to dwell on who I believed God to be, to remember His promises to me as His child. When I got home I looked through my bookshelves to a devotional that Pastor Mark had recommended and that I knew I had. I was unable to find it but I did come across a book that I had no idea that I even owned! Some time, I have no idea when, this book came into my possession, but I had "shelved" it. It is a book by Kay Arthur, "God, How Can I Live." I knew that God had meant for me to find this book at this exact moment. That in and of itself was more comforting that I can tell. Since then Pastor Mark has also given me another book that also has been very helpful, it is called "New Morning Mercies" by Paul David Tripp.

Here are some quotes from "God, How Can I Live" that have been particularly helpful:

"Thus (after quoting James 1:13) when adversity comes into your life, precious one, you can rest in the fact that first it had to be filtered through His sovereign fingers. And those are fingers of love, for God is love...."I can't understand it. It doesn't seem fair!" Is that what you are thinking? Remember, God's ways are not your ways, His thoughts are not your thoughts. Faith submits, taking God at His word and resting in His Character."
And after talking about Job chapter 1:
"O precious child of God, are you in great travail of soul because of some adversity? Fear not! Your Father is filtering it all through His fingers of love....Trust in Him, and it will result in good."

Do you realize what peace would be yours if you would only believe what God has said and bow your knee in humble, trusting thanksgiving. Then you would cease replaying bitter memories of horrible days gone by - days that have been overruled by His promises and His sovereign rule. With a touch....they have been turned to good - your eternal good.....May God grant you the blessed ability to see all of life through the prism of His infallible word.

Our tragedies are permitted for two reasons: that we might become more like Jesus and that others might see the reality of our God and long to know Him as we know Him. 2 Cor. 4:11
The more trials we experience, the more we become like Jesus, if we appropriate His grace. Therefore, all of life, whatever it brings, prepared us for eternity.

I wanted to share my journey with you now, before I am on the "other side." In the past I have always blogged about good times, fun memories and such. But I think it is important for people to be transparent when they are going through trials. Reading about Kay Arthur's trials and hearing of trials of others can be comforting, especially when you hear how God is comforting them in the midst of their difficulties. Since that low point in November, I have been working to find the source of some of my difficulties. I have found some things that have been helpful, but if my lowest point was a minus 10, and being strong and healthy is a positive 10, and being just OK is zero, I vary between a -8 and a -4 now. It doesn't take much ( a few bad night's sleep for example) and I find myself crying whenever I am alone, again. I have days where I can feel God's presence, but most days I still feel that I am in a spiritual battle ground and that I am losing the battle. Since my low point, I had taken a fall (literally) and have aggravated my knee injury. My back pain reached epic proportions and I ended up going to the urgent care clinic. I have since been on 12 hour prescription pain meds, muscle relaxants and I am now going to physical therapy. My chiropractor and my physical therapist have been able to get my back into alignment, but it goes back out easily. My L5 disc is the source of my problems, and needs to heal. I can't sit in church or in an upright chair for more than a few minutes without my back going into spasms. Also, my stomach is still causing me pain, mostly at night but also when I am upset about anything (for example, my back pain often causes me to feel nauseated which leads to stomach pain...). I had an endoscopy done and the preliminary result was erosive grastropathy...basically the lining of my stomach is eroding away. I won't know the cause of this (it could be viral, bacterial or just the result of constant stress) until the biopsy results come in. But there is some comfort knowing that my stomach pain is not my imagination!

For the first time in my life I am dealing with multiple physical ailments, two of which are the most debilitating I have ever had (my knee has been worse before). Any of the three can cause me to not be able to sleep or function at a normal level during the day. I am also dealing with anemia (could be caused by my stomach problem as it can inhibit absorption of nutrition) and low immunity/recurring infections (7 rounds of antibiotics in the last 8 months, two for a jaw infection after getting a tooth extracted, the rest for recurring sinus infections). I take dozens of natural supplements to try to help with these ailments, but I don' seem to be making any headway (I am currently on antibiotics again...). Emotionally I am still up and down....sleep deprivation plus grief as well as dealing with nearly constant pain can really get me down at times, especially at night.

Wow, this is such a downer blog post! Oh - and I forgot to mention that Dayton (11 years old) had his appendix burst and had emergency surgery on Thanksgiving Day, and spent four days in the hospital! He is doing great though. For that I am more than grateful! Daryl was able to stay with him nearly the entire time, as I was still dealing with my latest sinus infection. And, we have had two stomach bugs run through the family as well as two different colds in the last three weeks. Currently all four little girls are sick with a bad cough, Carese is the worst at the moment, running a fever all day yesterday. Christy showed signs of coming down with this cold yesterday.

I hope to blog again regularly and keep you updated as to what God is doing in my life. I keep reminding myself of what I believe about God:

God Loves Me, enough to send His Son to DIE for me!
God knows what is best for me
Every trial comes into my life after it is filtered through His loving hand and is for my good and His glory.
God has this - He is in control, nothing surprises Him.
God has a plan for my life and my family - to prosper me and not to harm me

I know that my heart will follow where my mind is, so I know that if I dwell on the truth of God's love for me and His promises, I will eventually begin to feel it in my heart and soul once again.

***You MUST read my blog post, Into Darkness and out by Grace to get the whole story...all that you just read did not bring me out of the darkness and depression, it only gave me a short, partial relief...I went back under. But the story doesn't end there! PLEASE READ!***

So - time to look at the bright side of my life! In the last 8 months, there have been some good times.

In July I got to spend the day with Jonathan, riding in his big truck! It was a fun day, and I was surprised how different things look from 10 feet off the ground! It was also enlightening what truck drivers have to deal with and I am more considerate of semi-trucks on the road now!

Last July we had a work party here where friends came over and helped us put more of our land into lawn, paint and clean up the front of the house to prepare for a new appraisal in hopes of getting rid of our mortgage insurance. It did pay off - our appraisal came in around $30,000 higher than the last time!

While we weren't able to do exactly what we had hoped, we got to do something even better - refinance our mortgage, with a lower interest rate and cut out three years (went from 23 years left to a 20 year mortgage). Our monthly payments will be lowered by roughly $400/month. We close on our new mortgage in just over a week from now!

We started watching Once Upon A Time (OUAT) last summer, and found out that it is filmed just across the border from us! I have been able to go to Steveston, B.C., AKA Storybrooke, and watch the filming three times now.

The last time I got to meet Robert Carlyle (Rumple Stiltskin in OUAT, as well as a villain in a James Bond film!), get a photograph with him as well as getting his signature on a OUAT playing card that I bought in Steveston!

We had a party at the boys' apartment where we all chose a character and dressed up, then we streamed the season premiere!

We had a great time, but Carese was a little freaked out at my "new look"! Daryl still dislikes the photos of me dressed as Regina/The Evil Queen! LOL! Rebekah dressed as Zelena was the most accurate and mind boggling imitation! Zelena is the Wicked Witch from Oz in OUAT.

Christy Update:

Christy celebrating her 5th birthday, August 5

Christy standing
all by herself!

Christy had some testing done in October. Her echo showed the same as what we saw last spring, so that's OK. Her hearing test showed that she has perfect hearing. Her MRI showed that her brain and its vessels are stable, and that was very good.

Christy LOVED being in the pool this summer!
She also did great camping for an entire week!

We have now finished all the testing that needed to be done since she came home. She will only need to go to Children's for periodic evaluations for neurology and cardiology and possibly dental work. She had a dental exam this fall and her teeth looked great! She even lost her first tooth about two weeks ago! I was not expecting that to happen already! She just doesn't seem old enough to lose teeth, but at nearly 5 1/2, she most certainly is!

She continues to be a daddy's girl, but does snuggle with me on occasion! She has recently began to put her left arm through her sleeve when she is getting dressed, and this is a huge milestone for her...she has always made getting dressed and undressed as difficult as possible.

She now has a stander (she needs to be bearing weight to build bone mass and core strength. We found out this summer that her hip sockets are not fully formed so she is at risk for dislocation), a walker (on loan, but one has been ordered for her) and enjoys running around the house in it.

We also got an adaptive stroller for her since she has outgrown most strollers now - she grew 4 inches in the last year! I also just sent in an application for handicapped parking permits and I am looking forward to being able to park closer to buildings when I have her with me!

Esther has had a very healthy summer and fall. She has weathered a few colds. She continues to communicate through sign language, but she knows hundreds of signs now. She understands everything you say to her. She loves to sing, especially songs in movies like Frozen! She LOVES Once Upon A Time, especially the bloopers! She will imitate every motion from those and it's hilarious!

Other milestones in our family:

Rebekah got her driver's license this summer, Rachel is working on getting hers. Both girls are working a temporary job for the holidays, working for a former classmate of one of my siblings, at the Lights Of Christmas at Warm Beach.

Reuben has been working at Perry Pallet since early spring and will probably get his driver's license this week.

Reuben and Rachel are gearing up for another great season of Bible Quizzing and both hope to be able to go to Nationals again this year!

Daniel is growing like a weed and has become my right hand man at home since Reuben is gone so much.

Dayton is doing better in school this year and loves to play with his Legos

Elizabeth is going weekly to a friends house and gets to ride horses! She loves this! She is a big helper for me, especially right now with the big girls gone on the weekends! She got braces earlier this year, but has them off already and has a special retainer that is helping with her lower teeth.

Carese is growing and is such a big talker. Some of the things she says are hilarious! She is a climber and seems to always have a bruise or two from falling while balancing on something! She is such a mommy's girl. She loves to go places with me, but gets panicky if she thinks I am not at home.

We've had some good times in the midst of our hard times, and for this I am so thankful! I have so many blessings to be thankful for. It's hard for me to share hardships, and to share with others when I am hurting, especially when I am in the midst of things. I love to share how God has worked in my life in the past and how He has done wonderful things and shown Himself to be faithful. It seems like I am so slow at growing in Christ when I can still be so slow to run to God. I am re-reading Stepping Heavenward for the eighth time now, and find such wonderful truths there, as well as challenges to look to God and focus on living for Him each and every day. I fail so often. Elizabeth Prentiss, the author of Stepping Heavenward wrote the hymn, More Love to Thee. Her little novel and all her written works prove that this was her goal in her life. I want to make it mine, but I seem so often to forget that I even want to love Him more, and end up being self absorbed and throwing my own pity parties. More often of late, especially when I can't sleep at night, I am crying out to God, and I know that this is His doing, His calling to find comfort in Him. For He is the only true place of comfort.

So, if you think of me and my family in the weeks and months to come, please pray that we will all seek Christ, run to our Father, bend our wills to His, and above all to bring Him glory through it all.

Christy Has A New Toy!

2015-11-11T12:31:00.000-08:00

I know, it's been forever since I blogged. I promise I will resume soon, but the last 5 months have been some of the hardest months of my life. I know the last time I blogged I posted that our daughter, Jessica, and her husband, Jon found out that their little one was diagnosed at 20 weeks gestation to have Trisomy 18. Jessica began blogging about her experience, and I recommend that you check out her blog, Mathew's Life. Matthew was born sleeping on Oct 6 and he was a beautiful, tiny little baby.

The reason for blogging today is to share with you (and her therapists) how well Christy is doing in her walker! This walker is on loan from Peace Health Children's Therapy where she recieves Physical and Speech therapy on a regular basis! As you can see from the videos, she has grown taller in the last few months and has new knee braces that allow for bending but make it very hard for her to hyper-extent her knees.

This first video she has the wheels all locked so she can only go forward and has slight resistance and she can not turn:

This video shows her "free wheeling" where all wheels can turn/go forwards and backwards and no resistance

This last one is her going away from the camera with wheels locked as they are in the first video

A Wedding, Hospital Stays, MRIs, Pregnancy and more....

2015-06-23T23:49:00.001-07:00

In the entire time of my blogging career, this has been the longest absence of posting. I have missed it, but I also have been in a new place that left so little time for the computer. A big part of the problem is I no longer has a laptop, it died, may it rest in peace. We do have another laptop but it just doesn't feel like mine, and I like my new life without a laptop between me and my family. I do have a little 7 inch tablet that can help me check emails, stay in touch through Facebook and do some business stuff including banking, and for now this seems to be a good place. But I do miss blogging.

Why do I miss blogging? I miss it because it is a way for me to review my life that is passing by so quickly that before I know it, 6 months has flown by! And so many seemingly unimportant things may go by without notice. I also love to blog because then I can share things with my family someday, and I like to go through my blog to remember when things happens and maybe to help me remember details that I have forgotten!

So, here I am, going to try to do a fly over of the last 6 months, and it's going to kill me be brief. I so wanted to devote an entire blog post to Jessica's wedding, but it just isn't a reality for me right now.

For my readers who like the sweetened condensed version, here's my outline of the first 6 months of 2015:
January - Jessica and Jon's wedding, Christy's sedated MRI/dental work, Seahawks Mania!
February - Crutches, more Seahawks mania, finding a new normal (not very successfully), Jessica's Pregnant!
March - Both girls hospitalized, everyone sick in one way or another, results of the MRI (she has had a stroke, probably around the time of her heart surgery at 18 months), 30th wedding anniversary
April - I have no idea...other than I was so sick I was basically bedridden for 3 weeks and implementing new protocols for reducing Christy's risk of another stroke and Christy's sleep study and hip exrays, Reuben starts a part time job. Rachel and Reuben go to Pennsylvania for National Bible Competition.
May - Sick again, but not as long, Rebekah get's her driver's licence, Christy get's a crawler, and a stander is ordered.
June - Jessica's 20 week ultrasound (baby has problems), Reuben gets a second part time job and starts driver's ed, Christy's cardiology and audiology reports, as well as a consult with an orthopedic doctor about her hip exrays, plus the sleep study results, Christy starting on oxygen at night.

So, here's some more detail about each month, but I'll still try to keep it to a minimum:

January

Jessica and Jon had their rehearsal and dinner on January 2nd, the night before their wedding. We had spent a couple of days previously decorating the church sanctuary, gym and foyer. It turned out beautifully! It was so much work, but it was worth it.

The rehearsal went well, and we had a nice dinner, and then the children and I sang a song for Jessica. I had written words to the music for "Broken Hallelujah" that talked about her life, and these new changes with her getting married. She cried and everyone enjoyed it. I was surprised, I thought it was more funny that poignant, but I'm so glad I was able to do it even though we had only practiced a few times!

Jessica's wedding day started off ahead of schedule. We were ready to leave before it was time to read, so we sat down and played a few rounds of our favorite card game, Nerts (it's like speed+solitare). Then it was off to the church and the mad dash of getting everyone and everything ready.

Jessica made the most beautiful bride - she looked like a princess! The bridesmaid dresses that Jessica had made for everyone turned out amazing, as did the flower girl dresses. I did the hand sewing for the dresses and made all the flower arrangements (with some help here and there).

When it was time for her to come down the isle, her wonderful husband to be was overcome with emotion, as were most of us! They had worked so hard to have a courtship that honored God, and an engagement that drew them closer together yet saved even their first kiss for this special day.

The ceremony was beautiful, and the music was amazing. The pianist was my dear friend, Ilsa, who also taught me to do the flower work! She also made all the bouquets, even Jessica's, which was a work of art!

After the ceremony there was photographs, and a video of photographs of them growing up and their courtship and engagement. They had their first dance, and we played some games, and then before we knew it, it was time to them to ride off into the sunset! No regrets, a most beautiful day indeed.

And the best part for them - a honeymoon spending 10 days in Hawaii! Oh my it was hard not to be jealous since I've never been there!

And then we were back home, without Jessica, trying to find a new normal. I really have no idea what went on much back then, only that the girls had their therapy, Rebekah was still working on learning to drive and we were working to find a new way to function without the push of a wedding to put on.

Christy had an overnight stay at Children's to have sedated dental work and a sedated MRI. We got a call very quickly after the MRI as the result they said were very interesting and that they indicated that she had suffered a stroke sometime around when she had her open heart surgery. They referred us to the neurology clinic, and set up appointments with a specialist there who works with children who have her type of stroke (vascular anomalies). More on that later!

One thing that we did a lot of was going to the big boy's apartment to watch the Seahawks game - and they were playing so well in the playoffs! I even had my nails done special as the Superbowl approached!

Here's a highlights video of Jon and Jessica's wedding - hope you can take the time to watch it!

Jon and Jessica Wedding Film @ Spring Creek Bible Church from Greg Thames on Vimeo.

February

Things began to fall into a routine, except that my old knee injury started to flare up. When bringing Christy from her hospital room to the car after her overnight stay, I had pushed her heavily ladened strolled while carrying my luggage. The extra weight aggravated my knee and I ended up on crutches again for 3 weeks. YUCK! Thankfully, with lots of icing, rest, elevation and patience, it settled down and I was able to get off the crutches...next time, as the doctor said, I might end up needing surgery.

Jon and Jessica were back home and she was coming out to the house to work once or twice a week. We planned the best Superbowl party ever, at least for our family...oh yeah, it was the first time we had actually planned a Superbowl party!

It wasn't long before we found out that Jon and Jessica were expecting a honeymoon baby! They were overjoyed as they were hoping to get pregnant right away! What a blessing! But the tiredness set in quickly, and she began to cut down on how often she was coming out to work, so Rebekah, Rachel and I were working together to make up for some of her lack of working by doing some of the shipping.

We also took Christy down to Seattle to meet with the neurologist, Dr La-Fond. She was amazing. She took a long time explaining to us what they saw in the MRI, and showed us the images. We were shocked at the extent of damage - about 1/2 of her brain on the right side is just gone - nothing there. She said that the type of stroke that Christy suffered was from a clot forming in the heart and going to the brain, causing a blockage and lack of oxygen. She also explained that when the brain is damaged and the tissues are dead, your white blood cells come in and clean house - leaving nothing behind. A vacancy. This vacancy allowed her ventricals to dilate into the open space, but this was not concerning to her. What does concern her is that the vessels going to the right brain are smaller than those going to her left. This could be just the way it is, or it could be a degenerating situation. Christy will be having another MRI in October to see if there are any changes.

The darker grey on the right side is where the
brain is gone. The black part is the ventricals
that hold the cerebral fluid

But what did this mean for Christy? It means that we now need to work to reduce her risks of having future strokes, as she is at a higher risk since she has had a stroke. Her heart repair also puts her at higher risk. So the things we work to avoid are dehydration, illnesses (especially chicken pox, which we have had her vaccinated for now) fevers, and low oxygen levels. She also gets 1/2 a child's aspirin once a day to reduce her likelihood of forming a clot, as due to a heart defect/repair, the abnormal blood flow can lead to clot formation in her heart.

So we had to get serious about her getting her fluids. This meant we really needed to go to night time feeds. So we got a wedge, and I created a "sling" that holds her in the general position of staying on the wedge and we starting giving her 2 cans of formula at night. We tried to give her the additional 400 mls of water, 1/3 after each meal, but it just was a hassle, so now we give that to her during her naps. This has worked very well and has been the best solution for her getting her fluids consistently.

Oh - and that G-Tube? It was going great, until I nearly pulled it out the night before Jessica's wedding, but it pulled hard enough to cause bleeding, and that later developed an infection. But a round of antibiotics (oral and topical) did the trick. The infection tried to come back, but I caught it quickly and it only required topical antibiotics the second time. Then I heard that organic bamboo velour can be a life saver with G-Tubes and reducing the incidence of the development of granular tissue, so I made a bunch of G-Tube pads using that and we have had no problem since! Much better to prevent the granular tissue than to have to deal with getting rid of it. Although we did have great success at using Granulotion to get rid of granular tissue when we needed to.

March

Things seemed to be going along nicely and them WHAM! Sickess hit. And this was a bad one. For the older members of the family it was a really bad cold with a cough and freaked me out. I heard Daniel in the bathroom coughing and coughing and coughing and not able to clear his airway and I thought, "This could kill the girls!" Elizabeth got it and she had that terrible, difficult to clear the airway mucous too! And then Christy got it...and then Carese, and then Esther.

Christy ended up in the hospital, starting Saturday night, after about 4 days, with a double ear infection and pneumonia. She tested positive for RSV. I stayed with her the first full day, but during that night I became violently ill with an intestinal illness and had to go home. Daryl and I passed in the night on the freeway as he took up the hospital vigil while I went home. The next day I could barely walk to the bathroom I was so weak. Tuesday was only slightly better, and then I became aware of how sick Carese and Esther were. Wednesday Esther took a turn for the worst and by evening I took her in. They admitted her and she got to share a room with Christy. Esther, however, was not as sick as we thought, and after a night of oxygen, she was fine all day without it.

Christy was finally doing great, but still needed oxygen whenever she slept. Thursday night was no difference for either girls. Friday both were ready to go home, but Christy still needed oxygen, so they sent us home and had Norco bring out supplies for giving Christy oxygen at night (a first for our family). It went well, and after a few nights she no longer needed it. And that pretty much brought us to the end of March before we were all done with breathing treatments and antibiotics for the girls.

We were all just recovered enough for Daryl and I to get away for three days/two nights to Victoria B.C. to celebrate our 30th wedding anniversary! I was such a sweet time of site seeing, movie going and even a little walking/hiking! We had a great time and it was such a blessing to have that time together with me healthy, if even just for those few days!

April

April is pretty much loss for me. I was down with a sinus infection that caused profound dizziness and incredible headaches. After suffering for 10 days, I went to the doctor and got on antibiotics. While they helped remarkably after about 3 days, as in my massive headaches were gone, I dealt with debilitating fatigue and dizziness so I was pretty much useless and spent most of my time in bed for the next 8 days or so. So April was pretty much a write off for me.

I was healthy enough (barely) to bring Christy to Seattle for a slew of clinic appointments and a sleep study. It all went well, and this time we did not get a call right away about her sleep study, so that was good news too. We would have to wait until June to get the results...that is a very long wait! While there we met with a rehabilitation therapist. She went over Christy's history and evaluated her needs. She gave me some great resources and ideas and also had us get her hips exrayed. These exrays revealed that her hips are not properly developed and she is at a risk for dislocation. This condition is very common in people who have Down Syndrome, so it wasn't a huge surprise.

The last week on April, Reuben and Rachel flew to Pennsylvania with their respective teams to participate in the Nations Bible Quizzing Competition. They had a great time and both did very well. Reuben was awarded top quizzer and top memorizer for our counties teams, and Rachel was in the top 15 quizzers too! Rachel memorized 211 verses and Reuben memorized over 400 verses. It's a great way to get kids to hide God's word in their heart. I've had at least once child doing Bible Quizzing (sponsored by Teens For Christ) for over 15 years now!

May

May 7, 2014

May 7, 2015

May 7 we celebrated Christy's "gotch day". That was the day we brought her out of the group home. March 17 marked one year since she came into our home. She has grown so much and learned so many new things in the last year, it is truly amazing. She is amazing!

Another huge milestone in the month of May was that Rebekah got her driver's license! She had elected to wait to get her permit until after she turned 18. She has had her permit for about 18 months, but due to logistics it took her a long time to get enought practice in, what with the adoption, hospitalizations, holidays and the wedding! We are all happy to have another driver in the house again! It is so helpful!!!!

Also, Reuben started working part time at Perry Pallets, where our son Jonathan drives as a commercial truck driver!

Just a little ways into May and suddenly all the symptoms of the sinus infection were back, but this time I only waited 2 days to go in. After taking the stronger anti-biotics for 48 hours I was noticably better, and was back to nearly normal within the week. The stronger antibiotics were hard on me though, and it took a few weeks of probiotics and antifungal stuff to get me recovered. By the end of May I was no longer believing that I would never have energy again, and had moments of feeling healthy! There was hope! I realized that our intensely crazy, stressful blessed year had taken it's toll on my health and I needed to work to regain my immunity and health! So that's what I have done!

During May Christy had gotten new, better let bracing and had been doing some standing and some practice walking with lots of support. Her physical therapist was able to loan us a "crawler" and Christy is beginning to figure it out. It would help if I could get her in it more regularly....This therapist also has been working to get a special stand-to-sit type of stander for Christy so she can spend more time each day bearing weight so she can get stronger leg bones and build her leg and core strength to further prepare her for walking! We are still waiting for this, but it should be arriving soon!

June

On June 4, Jessica and Jon went in for their 20 week ultrasound. They had been planning a home birth, but had opted for an ultrasound to make sure that a home birth would be OK for their baby. The ultrasound revealed several problems for their baby. She called in tears. So hard! They said that they say cysts on the babies brain, a possible club foot and what they did see of the heart was not normal. They said they suspected Trisomy 18. She blogged about this day on her new blog, Matthew's Life

We all cried and cried as we tried to wrap our brains around this. That first weekend was so difficult. Saturday night after going to bed, I cried and cried - seemed like I would never stop. That was my low point. I continued to have times when I was weepy, but they came less and less.

They were referred to a specialist the following Tuesday. I was able to go with them and see the ultrasound. They confirmed what the first ultrasound showed, and saw a better image of the heart. Their baby had a VSD, an ASD and an AV Canal defect. Even though they tried, they were unable to determine if the baby was a boy or a girl. They decided to get a blood test to detect fetal DNA, but the test takes a week to get results. This test would also tell them the sex of the baby. Jon and Jessica now wanted to know so they could name their baby and begin to bond better, and to cherish this baby each day that they could. You can read her writing about this day on Matthew's Life too.

Life at home during this time continued to be busy, and we began our summer break from school (not that we had been doing school regularly, but I finally decided to stop beating myself up about our lack of schooling for a few months, next year will be better, right???) Rebekah and Rachel had planted a garden and it was coming along nicely. Reuben is now working 2 days a week learning construction as well as three days a week at Perry Pallets. He also started Driver's Ed on June 16, so he is either working or sleeping these days it seems!

The day after Jessica's appointment with the specialist, Daryl and I took Christy and Esther to Children's. They both had hearing tests, and Christy had a cardiology appointment and a consultation with an orthopedic doctor to discuss her hips. They both had overall good hearing tests, but there was some concern about Christy's right ear, so they are going to repeat some of the tests when she is sedated for her next MRI in October. The audiologists recommended that Esther gets more speech therapy to enable her to communicate better. Her signing is really growing, but her verbal speech has not improved much until just recently. She can now say nearly all the letters of the alphabet when she's watching the Signing Time alphabet video!

Christy's Echocardiogram was much clearer this time compared to last year's. It revealed that she has an unrepaired ASD (they repaired one) and that her AV Canal repaired valves are leaking a bit. This doesn't mean she needs surgery, but in light of her sleep study (she is doing better, but not good) she is now getting oxygen at night. She will have another echo during her sedation in October to see if some of the blood flow problems were related to her stressing about having the echo done. But fo now, neither of the girls have any planned trips to Children's...yay!

On Wednesday Jessica and Jon got the results of the blood test (it's call a free cell test, or a Panorama test), and it showed that they are having a little boy and that he doess test positive for Trisomy 18. While the test in and of itself is not conclusive, when compared with the ultrasound findings, it's a definitive diagnosis. I'm sure Jessica will be blogging about this anyday now!

Also on Wednesday I was able to finally get the results of Christy's sleep study way back in April. While her numbers have improved, she still has mild obstructive sleep apnea. This combined with the new Echo information means that it would be best for her heart and lungs if she would get supplimental oxygen while she sleeps. She reached as low as 84% oxygen saturation during the sleep study. So this is now our new normal. So far, she doesn't like it, and it takes longer for her to fall asleep and I need to check her after she falls asleep to make sure the nasal canula is in the right place, but I'm sure she will eventually get used to it...untill then, please forgive me if I fall asleep while talking, writing, or anything really!

Last week Daryl's spring project finally got use! He has been working to build the ultimate swing set. We got the tubing at a garage sale last summer, and after lots of planning and welding and lots of heavy lifting, it made it into the yard and we got some chain and go the swings in place. We do plan to get proper attachments at the top and plan to have some swivels for using a proper tire swing and hammocks and other therapy type swings in the future! Also last week Reuben started Driver's Ed!!!

On Father's Day we had Christy dedicated at church. It was amazing. Our pastor's prayer was such a blessing, and he shared a little of Christy's life and how God had worked in amazing ways to bring her our of Bulgaria and into our home. Such a sweet Father's day!

On Monday, I went with Jon and Jessica to Seattle for their appointment with the OB at the University of Washington Fetal Maternal clinic to discuss the results of the blood test. They had lots of questions and the doctor carefull answered every question. She was gentle and compassionate and we all felt like she was a great person to work with. They also met with a genetic councelor who did an amazing job of explaining trisomies in general, and I even learned a few things! The best part of the day though, was that we got to eat lunch with the Merry Family. We had connected through a mutual friend and a Facebook group. They have a little girl who is 9 months old and has full Trisomy 18. We even got to hold her! Todd and Molly are fellow believers, homeschoolers and they ministered to us all and answered so many questions from the perspective of having lived through the process of carrying a child with such a dire prognosis. Todd and Molly even prayed with us, and what a blessing that was! You can read about their journey with Vivien on their blog, Merry Musings

WOW! No wonder I feel like I've been in a whirlwind for months now...The last 6 months have probably been the most intense, most stressful months in my life to date. And that is saying a lot! And it doesn't seem to be letting up much in the near future.

There is still an entire week left in June, but this blog post is so overdue, that I am not going to hold it up over formalities! Who knows, maybe I'll even blog again before the end of the month to fill in the things I forgot about today!

Let me end on this note. Please pray for Jessica and Jon and our families as we walk this difficult road of planning for the possibility that their precious little Matthew will spend very little time in their arms, while hoping for a better outcome. Pray that we will all experience God's grace and compassion like never before. I've been through a lot with my children, even a 20 week pregnancy loss, but what they face seems from this view to be even harder. But our God is a big God, and this is not a Chance occurance, a random fluke, this isn't what LIFE has thrown our way. This came to us filtered through the loving hand of our Heavenly Father, and He does all things well. This is for our good and His Glory. Jon and Jessica are praying that through Matthew's life, not matter how short or how long, will bring glory to God.

I can not say this loud enough, long enough, or often enough....

Every Child is a Blessing, no matter their abilities, no matter the length of their days, no matter their appearance.

Every Child is a Blessing.

We only fail to see that they are a blessing when we no longer see them as an eternal being created by the Hand of God Almighty.

If we see them as a burden, then they will seem to be a burden.

If we look through the Father's eyes, and into eternity, then we will see the beauty in every child and the blessing that they truly are.

I can't believe it's been two months, part 2 - Christmas 2014

2015-02-07T13:57:00.000-08:00

This post will share things about our Christmas!

With Jessica's wedding just 10 days after Christmas, there were many times we both thought "What in the WORLD were we thinking????" There was never any down time for Jessica or I. I was making decorations, ordering Christmas gifts, ordering suits for the boys and clothing accessories for the girls, shoes for everyone and planning two big Christmas meals (not everyone could be home for the same meal, and I figured more left overs the week of the wedding would be a good idea!) and doing the hand sewing on the 6 bridesmaid's dresses and 2 flower girl dresses when Jessica needed it done!

All the kid's exchange gifts ready and waiting for the fun, on top of the
free piano that Jessica got in preparation for her moving away!

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In the few spare moments I could snatch, we put up Christmas decorations and began to do a few Christmas Traditions. Unlike earlier years, we were unable to have all our children home at the same time for a dinner, so we had a ham dinner on Christmas Eve just after everyone of the children were at the house for just about an hour to do the children's gift exchange.

For years the children have exchanged names between each other and the love to do this. For a long time we've divided the gift exchange into "littles" and "bigs." The "littles" are those who are challenged to acquire their own money, so the cost limit is $5, and they have to do what they are capable of around the house to earn the money to purchase the gift they are to give. This is generally those under the age of 12. The "bigs" are all the children who have a way to earn money, whether it's working for my business or they have a "real" job, as they like to say, or they are capable of earing a larger amount by doing big jobs for mom (like washing our van).

For me the best part of this gift exchange is not watching the children open their gifts, but watching all the secrets, planning, wrapping and excitement in the givers. Especially when that wonderful moment comes when this gift they have worked so hard to come by is finally going to be opened! The joy and excitement on the face of the giver is so worth it all!

I think as the years go by, the grandchildren will be added to the exchange, but time will tell. Our precious first grand-daughter, Katelyn, wasn't old enough this year to do anything but enjoy being held and fawned over!

One of our biggest, funnest, most sugar filled fun on the Christmas season is the Christmas Sugar Cookies! This year we tried something new - disposable icing bags. we just clipped a small hole in the end and didn't even need icing tips! This was a huge success! this made for less mess and more fantastic cookies!

Another great idea that Rebekah came up with was putting the sprinkles in a cupcake baking pan! So much easier and no sprinkle containers spilling! My contribution to the best ever decorating session was purchasing a disposable table cloth from the dollar store - just roll it up when we were done and throw it away!!!!

One big difference this year is that the cookie decorating didn't start until Christmas Eve afternoon! So it was left out for all the big kids who came home for the holidays to add their handiwork to some cookies too. We even had to condense it to half the table to we could play some of our traditional Christmas games! This year it was Ticket To Ride. Our other new favorite game is Settler of Catan. We play with the Cities and Knights and the Seafarers expansion packs, so we like to refer to our games as the Seafaring Knights of Catan!

The children put up pretty much all the decorations during December, except for the lights. I always do that. Finally, on Christmas week, I got out my favorite decor and also was able to get a few new things, like the Willow Tree Nativity set which I got a steal of a deal on through coupons and a sale! Our old nativity set was pretty much just broken up ceramic figures...Mary had lost her arm, the donkey was headless...so on and so forth. I don't think even one figurine was not injured in some way so it was time to put them out of our misery and start over from scratch! Surprisingly, my porcelain caroler have survives many, many years without breaking anything!

Another Christmas tradition is doing jigsaw puzzles. Every year we put together a new one. For our crazy, busy, unorganized family, puzzles are usually disposable, sad to say. We can usually put together a new puzzle and still have all the pieces, but very few ever get made a second time. This year we bought a set of 12 puzzles varying from 250 pieces to 100 peices. We spent many hours doing puzzles together! My dad used to love doing puzzles and I would help out, he would love this tradition!

After a wonderful evening of fun, family, food, games and gifts, it was time to get everyone tucked into bed.

Another of our family traditions is doing goody bags on Christmas morning. We began avoiding anything relating to Santa Claus nearly 20 years ago. Our decorations do not include Santa, nor do we include Santa in our Christmas. We do, however, give gifts, and have a Christmas tree. I know some will think this is bad, but we actually threw all our Christmas traditions out the window 19 years ago and only did the things that encouraged us to worship Christ and be thankful for His birth.

We also did things that encouraged our family to be knit together, making memories. We started out with lights, small presents (the wise men gave the baby Jesus gifts), music, making paper snowflakes, games and acting out the Bibles story with the children in costumes.

Through the years we have added back some old traditions, and made new ones. It's just who we are. So on Christmas morning for years, the children gathered in our bedroom at the appointed time (not before 7 am unless we come and get them), and we give them each a hand sewn goody bag filled with unique candies (PEZ are regulars) and small toys and gifts. Somes are unique for each child, but mostly now I buy things by the dozen to fill all the bags!

This year was the second year that we included spouses/fiances. We have decided that the spouse/fiance shares the bag, but there are a few things extra so they don't have to share everything! Jessica wanted her fiance, Jon, to be able to experience our Christmas traditions, so they spend all of Christmas Eve and Christmas morning with us (he even stayed the night, sleeping on in the living room on our two futons with our son, Jonathan). So everyone looks a little disheveled and most are still in their pajamas even! This is the second year we have done the goody bag giving in the living room - our family has out grown our bedroom now!

This year we had something new! Jason had brought a gift for every one of the kids! He brought nerf guns! So the goody bag exchange went into opening his gifts and soon it was mayhem and absolute fun! Laughter, running, yelling, hiding....all out nerf warfare!

Soon it was time to make breakfast - scrambled eggs (2 dozen), sausage (15 patties) and orange juliuses were on the menu this year!

And after breakfast, it was time to read from Luke 2 and that, my friends, was the most important part of our day. We love because He loved us first, We have because He gave. He came to die so we might LIVE. He gave up heaven and came to earth to die in our place so we can live in heaven someday, if we accept His gift of salvation. Need to know more, please read my blog post about the free gift of salvation!

Oh - and did I mention candy? Carese loved snitching candies all day!

Such fun memories! I wouldn't change a thing!

What are your favorite Christmas traditions?

I can't believe it's been nearly 2 months....Part 1

2015-01-20T23:11:00.001-08:00

So much has happened since the girls got home from the hospital that I can't possibly do it justice in one post, and I won't go into details (it's all a blur now anyway!). Here are photos and some descriptions of the insanity that was our merry life from Thanksgiving to just before Christmas!

First of all there was Thanksgiving but I have no photos. But we were very thankful indeed as two of my dear friends and their mother came around noon to deliver a complete Thanksgiving dinner for all of us! I was still swamped with medication schedules and getting up all night to do breathing treatments. I had threatened that Thanksgiving might just be chicken nuggets and tatortots! But we had a wonderful, homemade turkey dinner with all our favorite dishes!

Soon it was the Christmas season, but we were in the thick of wedding preparations. It was the second week of December before there was any "it's beginning to look a lot like Christmas" going on in our home, But little by little we got our act together. We were socked with a bad cold (that ended up croup with the 4 youngest girls) but no one had to be hospitalized, so we just limped along as best we could. Dress by dress, decoration by decoration, we began to be more and more prepared for both Christmas and Jessica's wedding.

O yeah - Jessica began a courtship last June, got engaged at the end of August and got married on January.....but I'm saving the details of the courtship/engagement for a very special co-authored post coming here soon! I will post photos of the wedding here in part 3 of this series though, so hang tight!

Here is Jon and Jessica. They had Little Earthing Photography do their
engagement photos and Renee did a fantastic job!

We truly enjoyed watching Christy change after her surgery. She had more energy, she was more relaxed and she was biting less! She had some sleep issues still, but was better at night overall. She loves to laugh and loves to play with her siblings. She can get Esther giggling like no one else can. Esther loves her and whenever she sees Christy she goes to her and says "Hi, NG" - that is her name for Christy! They are such a blessing to each other!

Carese has taken to picking up my camera and taking random photos, mostly of her feet or ours as she lowers the camera as she presses the shutter! The above photo of Esther and I was taken by Carese!

The children got to open one set of gifts early - new pillows and sheets/pillow cases! The pillows came in HUGE boxes, so wraping would have been silly and storing them until Christmas was not practical. So we had them close their eyes and we dropped the boxes on their laps - two kids per box!

This spawned some serious bed making and bedroom cleaning. Here are some photos of some very happy kids all snuggled down for a long winters nap!

Here are also some photos of the super neatly made beds - the boys actually made their own beds and made me come take photos!! I should have done this years ago. But alas, the newness has worn off.....

One interesting thing has happened with Christy. I have struggled to get her three meals by mouth along with three cans of formula into her during her waking hours. If I succeeded with the formula she was hardly hungry at mealtime. So I decided to try having her sleep on a wedge and get tube feedings during nap and night time. This has worked out so very well!

By doing this (and it took several attempts to create a sling that would hold her in place on the wedge) it has also helped her sleep better. I now believe that a lot of her wakefulness at night has been due to reflux! I this photos you can see that the head of her crib is elevated. There is a contraption called a "sling" that goes over the end of the mattress and then along behind her back and around her sides. Then the end comes up between her legs and up to her armpits, where it velcroes shut. I have had to modify this after this photo as she figured out how to undue the velcro. Now the velcro is at the sides and the front tucks over and behind the velcro. You can google "Danny Slings" and purchase them ready made, but I couldn't do that! I did order the wedge from Amazon though.

This is the first attempt with the wedge on top of the mattress - she is so strong she just sat up and lifted the wedge right off the bed! Now the wedge is under the mattress and her sling is "slung" to the mattress!

She was actually laughing in this photos as she was so pleased that she had thwarted my attempts to keep her in one place at bed time. She still fights it and rocks and occassionally gets loose, but I have tweaked things so it hasn't happened for a while! She is a little Houdini, that is for sure!

I'll leave you with some photos of me working on the wedding decorations. I created nearly 50 corsage type decorations for decorating the church, plus about that many unique corsages for the people involved! I also made the tossing bouquet! It was fun to learn, but man it was time consuming! But learning this skill with my first daughter's wedding will reap great benefits with so many more daughters yet to be married!
And here is the last - watching Seahawks and the engaged couple while making corsages at our sons' apartment. GO HAWKS!!!!

A Quick Update on my Girlies!

2014-11-25T21:09:00.003-08:00

Christy was able to go home with Jessica on Tuesday, the same day that Esther was able to leave ICU. It took until late Thursday before Esther was able to come home. We are managing their medication/breathing treatments and it is finally getting easier now that Christy is doing fine without the bigger pain med, oxycodone. And by eliminating that one, she can also go without the stool softener and the antihistamine as she needed both of those to deal with the side effects she was suffering from taking the oxycodone! Now she's holding her own on Ibuprofen and Acetaminophen.

Since Esther tested positive to Rhinoviruse or Enterovirus, we are keeping Christy in a corner of my shop, but as of today she also got to play on the floor in my bedroom (this made her VERY happy).

Life with a G-Tube is so much easier than with an NG-Tube, but the recovery/pain (but it's hard to tell what is tonsil pain and what is G-Tube pain) has been difficult. But it's getting easier every day!

Here are some photos of the girls from last week:

Christy place - all her needs met in one place!

Esther waiting for Daddy to drive up to the hospital and bring us home!

A New First - Two Children Hospitalized at the same time....

2014-11-18T06:19:00.000-08:00

And hopefully it will the last time....

For those of my readers that like the quick overview, here's what has been going on:

-All kids came down with bad cold within 5 days of first outbreak (starting on 11/5)
-Esther got the cough but had improved by day 4 (last Tuesday)
-Esther gets rushed to our local ER with respiratory distress Wednesday night and is admitted with Jessica staying with her
-Thursday morning Christy goes to Seattle Children's for her scheduled G-Tube placement/tonsils & adenoids removal, Esther improving throughout the day
- Friday morning Esther takes a turn for the worst and is sent via helicopter to Children's Hospital
and at the same time the Rapid Response Team was called in for Christy due to continued increased -need for breathing support. (Jessica goes in helicopter, Daryl drives down here)
-Friday afternoon Christy improves after some respiratory work and breathing treatments, but Esther ends up in ICU
-Saturday Christy is improved enough to be discharged, so we get a hotel for Jessica, Reuben and Christy (Jessica's fiance, Jon, brought Reuben with as a chaperon but ends up staying as support for Jessica).
-Sunday - Esther is finally no longer getting worse but is not improving either, Christy is brought to ER late in the day, but the redness/discharge is normal so they go back to the hotel. Esther has another miserable evening and needs higher level of sedation to sleep.

Esther in the ER the first evening.

Almost two weeks ago Reuben came down with a nasty cold. 5 days later everyone of the children had it in some way, shape or form. I took Esther to see the pediatrician on Monday just to play it safe, as she had gotten the cough and she has had pneumonia two times before. He said she was doing well, but prescribed steroids to start the next day, but only if she was worse. The next day she was better, so I did not give her the steroids, but continued doing breathing treatments.

Napping during per-op

That same day, Tuesday, we got the call to let us know what time Christy's surgery was to be (we were to check in at 10:45). We talked about this cold (Christy had only developed a small cough over the weekend, but had seemed fine starting Monday), and they mentioned that Christy might end up being sent home if she presented with cold symptoms, so I got proactive and brought her in to see a pediatrician and get her opinion, and she said that Christy sounds and looked great.

pre-op, checking out her bracelets!

Christy had a rough night as she got a hold of Carese's pizza (she's allergic to tomatoes) and ended up being up a good portion of the night with stomach cramps. Esther's breathing sounded fine so I didn't do the "every 4 hours" breathing treatments through the night as I had been since Saturday.

All set for surgery

Wednesday was a busy day with orthodontist appointments and packing for Christy's trip to Seattle Children's Hospital for her planned surgical procedures. During dinner time, Esther began grunting.

After two breathing treatments she was still getting worse so I rushed her to the ER. She was getting worse on the way there even. In the first little while in the ER she declined even further, becoming unresponsive to all but extremely painful procedures. There was talk of sending her to Children's, but then she began to respond to their treatments enough for her to stay there. Jessica stayed overnight with her so I could get some sleep before taking Christy to Seattle Children's Hospital for her surgeries(G-Tube, Tonsilectomy/adenoidectomy).

Chiling during Christy's surgery

On Thursday Christy had her surgeries and all went well, but was a long day. Esther was back on room air and doing remarkably well.

Christy in recovery

Friday morning, Christy had been in a slow increase in the need for oxygen and it was becoming concerning so they call the Rapid Response Team (RRT). While the team of about 8 people were in our room, I got a text from Jessica that Esther had taken a severe turn for the worse and that they had no idea why and she was not responding to the highest level or oxygen that this hospital could give her. Back to Christy - they made some changes, including just having her position changed, and she responded well. But that time, I had been notified that they were preparing Esther to be fown to Children's via the medical helicopter. Talk about overwhelming! But God upheld me through even this.

Christy the next morning, just before they called the RRT

Later I actually heard the helicopter land and was soon able to go see Esther. She was struggling and mad, but working so hard to breath! Jessica went to be with Christy once she had given them Esthers recent history. After about an hour or so, they moved Esther onto the floor (I got to ride on the bed with her as she wouldn't let me out of the bed), just 4 doors down from Christy. Throughout the afternoon we were able to go from room to room, but being very careful with hand washing as they were testing both girls for viruses. Esther was presenting viral symptoms and Christy had some yellow junk come up when they removed her breathing tube after the surgeries.

Christy sitting up for the first time

Daryl has driven down after Esther left in the helicopter, and this was about when he showed up. Being the Daddy's girl that she is, she lit up when she saw him! By this time she had actually sat up a few times and seemed to be recovering nicely! Daryl also got some snuggle time with her daddy, even though she was feeling so miserable!

Over the next couple of hours, Esther continued to struggle more and need higher amounts of oxygen, as well as struggling against using the mask. So they called the Rapid Response Team to her room to evaluate her.

Snuggling with Jessica too!

It was decided that she needed to go to the ICU. Soon she was transferred up there (I road with her in the bed again!). In the end she was given in IV, placed on high flow oxygen and a sedative to help her deal with all the hard stuff of having so much taped to your face and attached to her.

AFter the decided to move her to the ICU
she actually calmed own for a little while

When she didn't have enough sedation she was miserable - she was getting ibuterol 24/7 with the oxygen, plus steroids via her IV. These all worked to make her jittery, jumpy, angry and frustrated. She wanted to tear everything off and throw any and all toys across the room. She was miserable. It took a continuous re-evaluating to keep the level of steroids right. Friday night was a long night and I only got about 3 hours sleep, and not all at once. Daryl watched over Christy so Jessica could get some sleep.

On Saturday, Esther had not improved but was no longer getting worse. Christy was getting better and they had determined that she could be discharged. Jessica's fiance, Jon, drove down We decided that the best plan was to get a hotel room and have Jessica and Reuben stay there with Christy and care for her there until We went home or Jessica felt competent to care for her in our busy home (post surgery is quite intensive care - pain meds around the clock, plus G-Tube site care and tube feedings plus watching for infection.

Esther in ICU - she looks so little with all equipment!

The logistics of getting Christy discharged and over to the hotel were quite overwhelming as some things needed to go to Christy's room, and others to the hotel, and we had laundry that needed to be done. God orchestrated things so that I had just the help I needed. I had posted on the International Down Syndrome Coalition FB page, requesting prayer for our situation, and from that Heather Y was able to come and help me out! We had never met, but she has a son just 3 months older than Esther who also has Down Syndrome. We enjoyed sharing our stories and we found that both our kids were at Children's at the same time even! She even brought some toys for Esther and some treats for me! What a blessing and such an encouragement to know that God was orchestrating things for me in such an amazing and special way! She also brought her 8 year old son and I enjoyed getting to know him - he was so sweet and so smart!

Having Heather with me worked so well as she could stay with Christy while I ran errands. She also helped me move things to Christy's room (it was more than I could carry), and she also made it possible for Reuben to get dinner. And then just when we really needed even more help, Daryl's brother and sister-in-law showed up with some nice things for Esther and myself (Starbucks Gift Card Yay!). This enabled me to get Christy out - they helped me move out of the room, pick up Christy's prescriptions, get the car packed and warmed up and on our way! It could not have gone better and it would have been a nightmare/extremely difficult to do it all on my own! I arrived at the hotel just minute before Jessica and Jon did, so they were available to help get moved into the hotel room - another amazing providence as they had been shopping since noon and by now it was after 6 pm, and yet they arrived at the hotel at just the right moment! Eventually I made it back to the hospital with a late dinner for Daryl and I.

That night Daryl stayed with Esther and I to enable me to get some much needed sleep once Esther was asleep (the most sleep in a night in over a week was not much, and interrupted often!). Esther had a very difficult evening, and only wanted me. She fussed and cried and yelled and got mad and was miserable. Finally, after midnight, a does of tylenol (I think she gets headachesand a higher level of sedation finally enabled her to sleep, which meant that I could sleep. Somewhere around midnight I lost it was was crying hard. Esther was starting to settle down then and she noticed that I was crying. She started patting my arm and saying to me "it's OK, it's OK" - well that just made me cry harder it was so sweet and touching. She is so loving and caring so it's doubly hard to see her be so sick and feeling so miserable!

Esther Monday morning, finally sedated enough to sleep

Sunday was another day of Esther staying the same. No improvement, but no regressing either. She had a difficult morning and evening again. Daryl headed home just after dinner so he could return to work on Monday. It was again after midnight before Esther was able to sleep, and it actually took adding a second/different sedative. Having had more sleep the night before and also a nap, helped, but it was still long, difficult evening. Christy ended up with some redness and discharge and Jessica was having trouble managing her pain, so I had her take her to Children's ER to have her looked at. They said this was normal, but to watch for it worsening. She went back to the hotel with Christy and they both had a relatively decent night - Jessica has to get up at least every 3 hours to give pain meds, but thankfully they are given through the feeding tube so Christy doesn't have to be woken up!

This morning Esther was noticeably improving, but Christy had a rough morning. But by adding the third pain med back into her routine, Christy was able be comfortable. Esther was having time of being upset, but she was able to rest comfortably while Reuben stayed with her while I went out and did some shopping.

When I returned, she was fine, but then she started being miserable again, they upped her sedation but it didn't help, it was getting worse. Then the nurse checked her IV (which had been fine just 45 minutes before) and the IV had come out of the vein and had begun to infiltrate into her arm - ouchies! So the doctor came and decided that Esther was ready to go to just a nasal cannula with getting her ibuterol via inhaler. She has done fine! I even got to give her a sponge bath and she got to drink apple juice (she got a feeding tube yesterday as she hadn't eaten since Wednesday and she wasn't allowed to eat or drink when on high flow oxygen or she would risk aspiration). She perked up like nobodies business!

Soon after that we got a visit from Child Life and she asked how they could help us get Esther more comfortable. She was able to bring a portable DVD player with some movies that she had not seen in while, including Toy Story 3! This did help her to calm down. They also brought a cloth doll which she has enjoyed holding.

Esther since then has had very little interest in sleeping, plus they are doing her Ibuterol every hour. I was able to sleep from midnight until 4 am, but found out that Esther had only slept a little over an hour, but had been content to just hang out in her bed while I slept. Since then I've been letting her watch movies. She is still working hard to breath, but mostly just breathing fast and not so much hard work as her airway is much improved, but can be on room air while she is awake. She is still shakey and has not shown interest in getting out of bed, thankfully. She prefers the bed over the recliner too. She has even eaten some jello and continues to drink apple juice so I think they might let her try some real food for breakfast and if that goes well, she will be able to have the feeding tube out!

So today, Jessica is taking Reuben and Christy home, and if all goes well, Esther will go out out ICU and should be going home Wednesday or Thursday!

This has been a most challenging week for all of us, but God has given me grace and strength for each moment. Even though at times I felt overwhelmed and cried, comfort and strength to go on was ready and waiting, I just needed to turn to my Lord in Prayer! Please join me and others in praying that Esther will go home soon and that Christy will continue to improve and need less pain reliever soon and that our adjustment to caring for these two at home (and the long drive home) will go well!

I will try to post again once she is on the floor, but it might not happen. Just remember that in this case, no news should mean good news!

A Very Busy October - Photograph Rich Post!

2014-11-01T19:59:00.000-07:00

As usual lately, I'm very short on time, but so many amazing things have been happening around here I feel the need to do at least a quick blogpost!

But first a quick update - Christy's surgery is scheduled for Nov 13 at Children's Hospital. They will be removing her tonsils and adenoids and placing a G-Tube. They expect that she will stay at the hospital at least 2 days, possibly more. We are to expect a couple of difficult weeks following the surgery as she recovers and we learn to care for the G-Tube. We greatly appreciate your prayers that these procedures will go smoothly and that her recovery will be uncomplicated! Thank you in advance!

I'm going to stick to just photos and some notes about the photos! Enjoy!

Jonathan was able to borrow a front loader from his workplace.
He and I spent an afternoon and evening clearing and leveling our old
garden area and moving dirt to a low spot! It was a lot of fun!

I became a Grandmother!
On October 10, just two days before their first anniversary,
my oldest son, Jeremy, and his wife, Sam, welcome
Kaytlin to their home!

Isn't she such a beutiful baby! We are so blessed and thankful
for her safe arrival!

Christy finally got to meet her other grandmother (my mom)

Carese and Christy got to wear their matching dresses from Bulgaria
and played together nicely while my mother watched!

Carese and Christy sleeping on the long trip to Grandma's house!

Every day I marvel at the blessing of this miracle baby!
She is adorable, cute and amazing!

The new aunts get an opportunity to meet Kaytlin! They all could not get enough!

It was incredible to watch my son love on his daughter!
I'm so proud of him and how he cares for his family!

Jason and his girlfriend, Bethany, spent an afternoon
teaching us all swing dancing! It was so much fun
that we are hoping to do it again soon!

Jason had also gotten a HUGE unicycle and brought it over and that led
to everyone riding a unicycle again! Even Daryl rode again!

Here is Christy the first full day that we had her!

Here is Christy sporting her new "chubby cheeks" look!
I was trying to get a "Before and After" photo.
She has now been home for 5 months!

See this? That is her right arm!
The arm that she couldn't move when we first met her!
She's getting stronger and is able to use it more all the time!

Christy is quite mobile when getting her tube feed!
We have to be careful to get all the air out of the bag
to keep air from getting in the tube and causing the
pump to stop and beep! It doesn't slow her down,
That is for sure!

I finally got the opportunity to get photos of Jonathan and the semi truck
that he drives!

Even better - I got to spend the better part of a day going with him
to Everett and back, with 3 stops to drop off pallets and
pick up wood!
I'll be devoting an entire blog post to this adventure soon!

We spent a wonderful afternoon at a friends house learning
how to make corsages and bootineers for Jessica's wedding in January!

This past week Jessica had bridal shower at our church!
On the left is her maid of honor, Makayla

She was blessed with many wonderful gifts!

A good friend of both Jessica and I, Elizabeth, was chosen
to do the "interview." She asked Jessica lots of questions about their courtship!

I was blessed (and overwhelmed at times) to bring all 7 of my daughters that night!

Have NG-Tube will travel!
My two beautiful "Extra Special" girlies!

I got to see/hold Kaytlin again at practice for The Messiah!
I am so hoping that I will be able to participate in the performances this year
along with Jeremy, Samantha and Rachel!

Two Weeks of NG-Tube, Seemingly No Closer to G-Tube Placement

2014-10-08T12:08:00.001-07:00

Wow - two weeks of insanity, my new lifestyle with a medically complicated child.

She is asking her hand what she should think about mommy feeding her with a syringe....this was very time consuming so
I requested that we go home with a pump, and that is exactly what we did!

I've heard a few of my readers don't like my long posts, but I know that others like the details. So here's the Cliff Notes version:

- NG-Tube trial a success
- Christy needs tonsils out at first surgery to avoid problems coming out of anesthesia due to her obstructive sleep apnea
- Christy needs medical home to be Neurodevelopmental Clinic at Children's Hospital.
- She will be assessed there in two weeks, as well as getting another swallow study and meeting with a nutritionist
- Best case scenario is tonsils, adenoids and G-Tube surgeries all together and hopefully in early November.

Scroll down for lots of photo and all the details for you detail loving readers!

Good morning! It took a long time for her to get to sleep after being rudely awakened after just falling asleep right after pulling her tube out...then having that mean mommy put it back. It took hours of mommy rocking and singing to settle her down. So glad she has a mommy now when she is so very, very sad!

Mommy invented a new way to secure the NG-Tube - make it a part of the hairdo!

Oh SOOO happy to see Daddy!

Mommy! Look, Daddy's Here!

So, back to my opening statement....Yep - that is what they refer to Christy as..."Medically Complicated"! This is much better than medically fragile - that is what Esther was until after her heart surgery at 3 months of age.

But that didn't stop us. No indeed. What did we do the day after getting out of the hospital? We took everybody (that still lives at home) to the Pumpkin Pitch in Burlington! Even Jessica's fiance came along!

Sweet Jon - swept Esther off her feet and carried her out into the field to help her find candy!
Jessica has got herself a winner with this guy!

The crew - our youngest 10 children plus Jon! We make a crowd all by ourselves!

Christy seemed to be very happy to be out and about that day,
as long as we kept her out of the wind!

Oh the Joy of grass, fresh air and freedom!

Esther loved being out and about too!

But back to Christy being Medically Complicated! Overall, Christy is quite healthy - she has not suffered from even a cold since we came home in spite of our family having three colds and two stomach viruses since she came home. It seems she has a great immune system in place, and that is good!

By feeding her thick foods all summer, I was able to avoid causing her to aspirate and that kept her healthy. But that was at a cost of low level dehydration. Thankfully this did not compromise her health. But if we had continued this routine, it could have. So now we are giving her fluids and extra calories through her NG Tube and it is working beautifully so far!

Carese enjoyed this sucker
for a long time!

In the past 2 weeks she has gained over 2 1/2 pounds! She is sleeping a little better and the dark circles under her eyes are much lighter now. She take shorter naps too. She still suffers from reflux, but it is better than it was when I was pushing thickened liquids via mouth. She is also now running 99 - 100% on her oxygen levels, whereas when I was pushing thickened liquids via mouth, she was running between 92-95%. This proves that even with thicker than pudding level thickened liquids she was still aspirating at possibly every meal. And she was loosing weight and tiring easily.

So she has passed all the requirements with the NG-Tube that show that she will benefit from having a G-Tube placed. But we can't schedule it yet.

Christy No Like EEG! She almost got her
NG Tube out with all her wiggling around!

At Seattle Children's they have a new protocol - a child need a medical home (a doctor/clinic) who will take the responsibility of ordering the surgery and for follow up care. Originally they had assigned her to pulmonary, but since her O2 stats improved so well in response to discontinuing her fluids by mouth, they no longer felt that that was the best place.

Everyone enjoyed the Buddy Walk again this year!

On Thursday after many phone calls and no one being able to get in touch with the surgeon for answers, the nurse suggested that we come to clinic tomorrow and get to talk with him face to face. So we scheduled that and I also requested that we get an appointment for Christy in the PASS clinic. This is a pre-surgery appointment where you meet with the anesthesia staff and they evaluate your child to see if they are in good shape for surgery and to address any concerns that anyone (parent or medical staff) might have concerning having the child sedated for surgery. I am so glad we did this last Friday (didn't plan to go down there again until Thursday, but it was needed in order to confer further with a hard to get a hold of surgeon, and to prove that Christy was indeed doing so well on the NG-Tube)! The anesthesia team is very concerned about her Obstructive Sleep Apnea (OSA), and that is they only place the G-Tube in her first surgery, her tonsils/OSA may make is very hard on her in recovery, maybe even cause a crisis. So they wanted to recommend having her tonsils/adenoids (T/A) out first, or at least having both procedures done at the same time. So she said that she would talk things over with the surgeon and ENT doctor and get back with me early this week.

Christy with her NG Hairdo and her knew Hello Kitty G-Tube enhanced back pack!!
Being out and about with an NG-Tube - no problem, just have to plan ahead!

Earlier that day when I met with the surgeon, he said that he really would like to see Christy have a swallow study done at Children's and that in all likelihood, they would be switching Christy to Neurodevelopmental (ND) for her medical home, which might require them to see her in clinic before they would do that. Bummer! Another trip to Seattle.

A photos is worth a thousand words....these two are becoming fast friends
and Esther likes to comfort Christy when she needs it!

Having an NG Tube does not mean she doesn't eat!
She still enjoys eating three meals a day!

On Monday I got a call from the ND clinic and it was even a doctor! Dr Lisa called to see what I understood as to what was going on with Christy and with Children's and why she needed to be seen there. She also agreed that a swallow study needed to be done. She also wanted us to see a nutritionist to go over her nutrition now that we've had the NG-Tube for a while. But she also said that they were scheduling into December, but that she would work to get us into the schedule in the next few weeks. Within a few hours, I got a call back that she could be seen for all three appointments in two weeks.

As of a few minutes ago, she is now scheduled for her T/A 2 weeks from Monday. If they decide it's best for her to just have her T/A done first all by itself, then it's all set up. If they want to combine the T/A and G-Tube we'll cancel that and schedule both together at a later date. If she has the T/A first she will most like not have the G-Tube place until December...not my first choice that is for sure!

So, here we are, doing the NG-Tube thing for an undisclosed amount of time. I'm guessing that if all goes well, she'll be getting her T/A + G-Tube surgeries at the same time and it will be sometime in November.

chicken alfredo with spinach....
nasty looking but she liked it!

thickened peaches on the left,
thickened chicken alfredo on right

Time will tell. At this point, we have figured out how to prevent Christy from pulling out the NG-Tube, but it was been a huge learning curve. My experience with Esther having an NG-Tube was limited to a newborn who had very little control over her limbs. Christy has lots of control over most of her limbs.

The first 5 days home after the NG-Tube placement, I had to put the NG-Tube back in 4 times. Not bad, and each time it was a little less traumatic for Christy, but I am so glad it's going so much better now.

She now noticed by sight when I switch
foods and wants to decide if she
will like it or not!

She does not like peaches
and she prefers not to eat pears!

We keep an arm brace on her left arm most of the time. She does not seem to mind this and is thrilled when we take it off. This has also led to her using her right arm more and that is a good thing! She has also successfully pulled the feeding tube out with her toes, so now she wears tights of footed pajamas all the time (she pulls socks off in seconds!). We also have to keep her arm brace under a long sleeved shirt as she will pull the velcro strap off with her teeth and shake the brace off in no time! So after learning these lessons, she has not been able to pull it out since last Thursday morning. So it is getting easier.

Monday I took the youngest nine children to the grand opening of an ice cream parlor
and we all enjoyed some great ice cream and just going somewhere just for the fun of it!
It also was great motivation for getting the Monday morning chores done!

So I have two weeks of normalcy - only appointments for therapy one day a week! I so need this. At first I was frustrated and bummed for the seeming delay for the next step, but since then I have seen that I need some time to just be home. I'm worn out and tired and stressed and all that leads to being further worn out/tired/stressed. So I'm going to make the most of this time and do a few things at home that I have been unable to do since the beginning of September - get caught up on things like laundry, getting school underway for my kids, doing therapy/preschool with Esther and just being there for my two year old who needs her mama! Of course that will all be happening between feeding Christy 3 healthy meals per day by mouth, and three tube feeds via her NG-Tube and feeding pump.

NG Tube Trial - Admitted to Seattle Children's Hospital

2014-09-25T18:38:00.000-07:00

Christy playing, Mommy doing paperwork
at General Surgery Clinic

So, once again, our week is nothing like we planned. Started out with just two days of appointments, but the trip to Children's Hospital in Seattle yesterday was going to be two appointments, and then they scheduled an Upper GI for this morning in order to move forward towards having a G-Tube Placed. So we were blessed with friends whom I only knew online (real life friends of my real life friend, Renee of Little Earthling Photography) who were willing to take us in spontaneously (we didn't even know we needed accomodations until after 5 pm!).

Christy hanging out with her/
oldest sister, Jessica!

So after crashing at their place (we had a lot common - Grace is expecting her 9th, and has adopted a little boy from Ukraine a few years back who has Down Syndrome). We got up super early to try to beat the traffic and headed in. In my sleep deprived state, I headed to Bellevue Children's (had been there twice within a week's time!). But we were still early, so going to the Seattle campus still worked out fine.

Catch me if you can!

Her Upper GI series exrays showed that she has no physical anomalies that would prevent having a G-Tube Place, yay! After consulting with the pumonologist, we were able to get a bed and she has be admitted and received her NG Tube and we will be here 24 - 48 hours until I understand how they want me to feed her and how that works with how I think she should be fed (i.e. negotiations are in progress!).

My silly, goofy, lovable girly!

She LOVES to eat!

She has been a great little traveler and took most every in stride....but getting the NG-Tube placed had her more upset than I have ever seen her, and I was her tormentor. It's so hard! She was able to pull it halfway out, so now she has a hand-mitt on so she can't snag the tube with her good hand.

Wow! Cool Crib!

Finally happy again after NG Tube was put in/'by
her big bad mama....but she's forgiven me already!

I am hoping that we will be able to be discharged tomorrow since I already have experience with the NG-Tube from Esther's first 4 1/2 months!

How tangled can I get?
Very Tangled!

I'll update if anything changes, but I'm hoping the next blogpost will be next week and from home! I'm hoping to travel to my mother's house this weekend to introduce Christy to her grandma!

Prayers appreciated for good progress and an early release and that all goes well at home in my absence!

Christy's 4 month update - Tonsils, Sleeping and Tubes, OH MY!

2014-09-19T08:53:00.000-07:00

Fresh Air = Sleepy Girl!

Camping = Double Stroller Time!

You may or may not have noticed that I did not do a "Three Months Home" blog post about Christy, but I did. I really wanted to do that, but I just didn't have the time, and our camera had gone missing so I couldn't post photos!

So much has happened since my last update on Christy that I can't post it all here, but here are some highlights, and then I'll tell you about her/my first ever sleep study plus updates on her current challenges!

"Wake Up Gi-Gi" (Carese's name for Christy!)

Right after my last "Christy Update" I took Christy in for a weight check. After her feeding evaluation in July, I realized that she was not gaining weight so on the therapists recommendation I began adding Pediasure to her diet. After two weeks of doing this I had her weight checked and she had gained 11 oz since she had come home. So that was working.

Then we left on a long campout. Our church has a campout every year, but we got up early. This year we arrive on Monday, and the official campout starts on Friday. Christy did amazingly well at camp, adjusting quickly to the outdoor life.

The only problem was that her crib was right next to my bed. Before the campout I was aware that she wakened about once a night and at home I would check on her when I heard her rocking her crib (literally) and usually it meant her nose was stuffy. I'd put a little coconut oil on her nose at the opening of her nostrils to help soften any crusties, and apply some essential oils for nasal congestion and calming and she'd rock herself back to sleep. I tried rocking her to sleep, but for so many years she has been calming herself to sleep, that if I try to rock her, she wakes completely up and thinks it's time to play....doesn't work at all to put her to sleep again.

Christy's bed right by mommy's
Head = sleep deprived mommy!

Well, it became apparent at camp that Christy was waking many more times than I had been aware, but she would usually comfort herself back to sleep. But every morning at 4 am sharp, she would wake completely up and start making a lot of noise, between rocking her crib (which would rock the whole trailer) and happy noises as she would see that mommy was right next to her crib. I would have to work to keep her quiet until she went back to sleep, which usually took 1 1/2 to 2 hours. Needless to say, I was not getting much sleep at camp, so much so that I had to bail and go home with the girls Saturday so I could get some sleep and not have a complete meltdown at camp!

Christy doing table time, playing with blocks,
as part of her daily therapy/play time at home.

In August Christy and Esther both saw the ENT, Dr Englais (sp?), at Seattle Children's Hospital. We discussed her snoring and sleep problems. Esther got exrays to check on her adenoids/possible regrowth but she is all clear! Christy, however, needs her tonsils out for sure, and the doctor said he was sure she needed her adenoids removed too, but didn't want to exray her for that and just make the final decision during surgery. We also discussed having this done when she gets her dental work done (did I mention that she needs sedated dental work done due to some cavities?). She will also get an MRI done when sedated so we have a better idea of the brain damage that resulted in her having Cerebral Palsy or a stroke (we are not sure which she has since we don't know when the brain damage occurred).

She does like to explore her world using her mouth!

The last week of August was our first Post Adoption Report home visit. We had a social worker from our home study agency come to our home to see how Christy was doing and how well we are caring for her as well as how she is doing in our family! We got the report back and it was like a pat on the back - she spoke of our family and Christy in glowing terms. Boy that sure meant a lot to me. This report should be back from getting apostilled any day now and then I will send it to our adoption agency and they will forward it to the Bulgarian authorities. These Post Adoption Reports help countries like Bulgaria to determine if it is in the best interest of the children for them to be adopted into families in the U.S. so these reports are vital to the ongoing adoptions for other orphans!

Rachel cutting Christy's nails - Christy does not like this,
but she did give me this great photo between her
complaining and squirming to get away!

Just to see how the dietary changes were working, I had her in for a weight check the day before the home visit and we found that she had gained about a pound since her weight check 4 weeks before - that was great news!

The first week of September was her swallow study. She did so well, cooperated so nicely, that we were able to get very good information about her swallowing...at least very accurate information. Christy has major aspiration problems. She showed laryngeal penetration (fancy term for food going down the wrong tube) on all thicknesses, even pudding. There is no term for thickness thicker than pudding, so the speech therapist referred to it as paste. This is not good, not good at all. Both the speech therapist and Christy's pediatrician are recommending that we place a G-Tube to aid in getting fluids into her, but we are/were hesitant about this.

My happy girl - in the waiting room at
Seattle Children's Sleep Clinic in Bellevue

So, we have been working to get her the proper liquids by giving her apple juice thickened with Thick It to just past pudding thickness. We were weighing her diapers to see how well she is extracting liquid from her foods/thickened liquids for proper hydration. If I gave her 1/3 cup of thickened apple juice at each meal, she had more than sufficient output. But, she has also been struggling to gain weight, so it's a balancing act at getting enough calories into her so adding more fluids (bulk with fewer calories) meant a possible trade off...being hydrated but not gaining weight. So for two weeks I've been working at this, and it's a struggle and when my life got SUPER busy last week and this week, it was nearly impossible to ensure that she was betting proper nutrition and proper hydration, and as of yesterday the scale said that she had actually lost weight (around 1/2 pound in 2 weeks) when we started adding more fluids....and her reflux has gotten worse too.

Christy all ready for bed - waiting to get hooked up
for her sleep study. Such a big crib....made me sad
to think of all those years she spent alone in a crib!

Yesterday I met with a nutritionist and we had a long talk about Christy's nutritional struggles. She watched me feed her lunch while we talked about all of that. She also recommended placing a G-Tube and we talked at length about the pros and cons of a G-Tube and so much of what she said now makes even more sense, especially after seeing how hard it is to get her properly hydrated when our days are busy. Yes, the last two weeks were busier than usual, but even taking that into account, it is very time consuming to get enough nutrition into her, and she tires before we are done feeding her and she is refluxing more now due to the greater volume in her stomach at meals. The nutritionist recommends moving to 6 smaller meals - great idea, but implementing that will be even that much harder for this busy mom. With a G-Tube she can get her in between meals food/liquids via her tube, and just feel her main meals by mouth, and give her fluids at meals through the tube. It's beginning to sound like the best way to me now.

My beautiful Bulgarian Princess!

I was getting head of thing there...the appointment with the nutritionist was yesterday on our way home from the sleep study and her sleep study set up appointment was on Monday!

On Monday we went to the Everett Children's clinic. After reviewing Christy's history, and check Christy's stats that day (wide awake and active her O2 stat was only 95%), she said they she was content to wait until after Christy had her tonsils and adenoids out to see if that corrected her sleep problems. I mentioned that the ENT had called for the sleep study to be done before the surgery so they would know what they were dealing with when she was sedated. She checked and I was right, so she quickly changed gears and started talking about scheduling the sleep study. She said that they were scheduling into November, but that she'd put her at the top of the urgent, cancellation list. She said they would call me tomorrow. I got the call an hour later and they said they were scheduling into January, but that they had a cancellation for Wednesday night....I jumped on that one!

The cool, light up welcome sign
- doubles as a nightlight!

Fast Forward to yesterday! We left early for the trip to Bellevue (about 1 1/2 hour drive in perfect traffic), around 3 pm, so I could have dinner with a friend/adoptive mom before the check in time of 7 pm. We checked in after I got lots of exercise finding the clinic (left the instruction in the car and there was only one sign that I did not read completely as I thought there would be more signs on where to go). They wanted me to bring her in to discuss the results a couple of weeks after the sleep study, but was able to turn that into a phone call scheduled since we live so far away, phew! If there was anything that caused concern, they would call us in two days to discuss that - so far, no phone calls!

After check in, we were shown to our room, and on the way the nurse pointed out an area where there were drinks and snacks that were available to us for free (which I was unable to take advantage of, except for a cup of coffee on the way out - but it was pretty good coffee!). Then we got down to the business of filling out forms and getting Christy ready for bed. She looked so tiny in the big crib! She does not look like a 4 year old!

"Watch this - I can do the magic table cloth trick!"

Yeah, not a happy Christy...

Once I was done and she was ready, the wiring began! They stuck things to her head for the EEG and then wrapped her head like a war wound victim and then a kind of stocking thing over all of that. Then she put on waste bands to measure her work of breathing, monitors to her legs to check for restless leg movements and the PulseOx to her toe. Lastly they attached a nasal canula that had things attached to monitor her breathing through her nose and mouth - this did not go over well with Christy at all! After everything was attached, the gazillion wires were held together like a big pony tail down her back.

What does the hand say about the nasal canula? NO!

Overall, Christy took it all in stride. But her method or rocking herself to sleep, and moving in many different positions as she does this made things difficult. As she would get close to sleep, some electrode or another would come off. They also ended up with the PulsOx on three extremities trying to get a better reading, but 95% seemed to just be her best reading. After 1 1/2 hours, she finally fell asleep...with that "hat" pretty much off her head. Around 1 am she started into her waking/rocking herself to sleep pattern. At one point they nurses had to come in and try to put the stuff on her head back on. It lasted a little while. At some point they added two additional waist band monitors too.

They ended up waking her up completely and making her unhappy with them twice in order to adjust things (mostly her nasal canula thing). I got some sleep, but not much. I heard Christy stop breathing many time, but usually for less than 10 seconds, so I am really curious about the results. At 6 am it was wake up time (we had no choice and it was a bit shocking!). Christy was a wired mess and looked like she had been tumbled in a dryer overnight! It took a while for the nurse to removed everything, but overall, Christy just hung out and tolerated it all beautifully.....right up until I was washing her hair in the sink (no counter).

Finally we were ready. Christy still had weird substances in her hair, but I put most of it into a half ponytail and that hid the worst of the problems....what I really needed was some detangler or conditioner (the hospital provided baby shampoo).

Christy ready to go home - did the best I
could with her hair as I couldn't get all the
gel out without traumatizing her!

We made a hasty get away, and I headed north - stopping to do the family shopping halfway home (she had taken a short nap on that portion of the journey). Christy also had a physical therapy session late in the morning. There we discussed acquiring braces/DAFOs for Christy to get her set up for weight bearing/gate training/walking practice. Then I met Daryl for lunch (had only seen him for 10 minutes since Sunday night!), and then Christy and I were off to the nutritionist appointment.

So I'm editing to add that I just found out that the Sleep Clinic called yesterday. I was able to talk to a nurse about her sleep study results already. Christy does have obstructive sleep apnea. Her O2 stats were on the low side, but not of urgent concern. The study showed that she wakes often, but did experience REM sleep and deep sleep at least for little while. Thankfully, they believe that her tonsillectomy might correct this problem. So we are moving forward with scheduling her surgery. She will be having a tonsillectomy, adenoidectomy, dental work, MRI and G-Tube placement all at one time so she only has to go under general anesthesia once (she was intubated for 5 days following her open heart surgery, so there is concern). I still have many phone calls to make!

Wow - I feel like God gave me a cushion of time with Christy without any major medical issues. That cushion is now gone. It's time to get down to business. Time to address her issues and work to make her life as pleasant as possible and enabling her to grow and develop and sleep (sleep is so important for growth and development, and so is proper nutrition and hydration)!

All Tuckered out - taking a nap on the way home!

I am excited about what the future may hold for Christy. She has been doing so well - learning new things, actively exploring her new world and interacting with her new family. Just think how much better she will do when she is not being hampered by her health issues!

I am also overwhelmed, but I've had two of the most incredibly busy weeks of my life. Next week the only thing on my calendar is Christy and Esther's therapy sessions on Tuesday. But that might change - I am making the phone call today about Christy getting a G-Tube.

Wednesday Weight Loss and Wedding Plans!

2014-09-17T12:14:00.000-07:00

I am so happy to share that our oldest daughter, Jessica, got engaged on Labor Day! She and Jon have known each other for nearly two years, and he shares an apartment with our two sons, and works where my husband and one son works, and attends our church - he joke that he was under 24 hour surveillance for a year before their courtship began! They are planning a wedding for January 3!

I am super short on time (like the craziest, never at home week of my life), but I wanted to get this posted and do my Weight loss Wednesday this too, but it will all be short and sweet!

They got professional engagement photos done by my friend, Renee of Little Earthling Photography! She did an amazing job!

Life has now kicked into high gear with wedding plans and trying on wedding dresses!

Christy has also had some health issues come up so we have had lots of Dr and specialist appointments - in short we are addressing her issues with sleep apnea and swallowing/aspiration problems. I'll post an update next week as then we will have the results from the sleep study that is happening tonight!

Here's my quicky Weight Loss Wednesday up too:

Did I overeat this week on any given day?
Nope - been survival eating since I've been so busy. Eating too little has been more of a problem!

Did I move more and exercise regularly?
Moved more but have had no time for doing my workout, sadly!

Do I feel lighter than I did at this time last week?
Nope, about the same.

Did I eat in secret or out of anger/frustration/happiness?
No - but I did have a few things that were "off plan" due to having to eat in unusual circumstances but they were mostly whole wheat type things, not sugar, so I do not feel guilty about it (well, there was that white pizza crust).

Did I feel that, at any time, I ran to food instead of to God?
No - too busy to do anything voluntarily!

Before I hopped on the scale, did I think I'd had a successful, God pleasing week?

Mostly - I just really felt that my eating was mostly not in my control. I've been eating away from home more than at home and it's really tough. I'm keeping next week's calendar as open as possible so I can get a handle on my eating (like more variety - peanuts are getting old!).

What were the measurable results?

I gained .7 pounds, but lost 1.5 inches, so I'm OK with this week.

Gotta Run! Nap, Packing and then off to drive 2 hours to Christy's Sleep Study Appointment!

And now

Thinner Thursday - Weight Loss Wednesday One Day Late!

2014-09-11T07:07:00.000-07:00

It's one day late, but I'm still calling it Weight Loss Wednesday because it's my blog and I can if I want to, so there!

Did I overeat this week on any given day?
No. Actually I struggled on some days with under-eating due to some very crazy/busy days and lots of time away from home. I came close on Thursday night as I had a big salad and a few too many dark chocolate covered blueberries (I know, some may see this as a cheat, but it did no trigger any cravings and I was watching the SeaHawks and it was the best snack I could find at the grocery store - I did have Daryl hide the bag so I couldn't have anymore until the next SeaHawks game....so you will be hearing more about this "cheat". I only feel a smidgen of guilt on this).

Did I move more and exercise regularly?
I did better than last week, but there is definitely room for improvement. I had my monthly and so a few days it was just not prudent for me to exercise, and the one day I did was pushing it for me. But yesterday I finally got the whole Basic Workout done and felt great all the way through - yahoo!

Do I feel lighter than I did at this time last week?
I do, but wasn't sure that the scale would agree with me since last week I was still recovering from that stomach bug and was feeling awfully light!

Did I eat in secret or out of anger/frustration/happiness?
No. Didn't really have time, but I did experience a lot of frustration this week due to time pressures, trying to get preschool/homeschool set up for the little girls and a crazy and busy week with doctor appointments and therapy and so forth.

Did I feel that, at any time, I ran to food instead of to God?
No. I am doing better at having my quiet time (still room for improvement) and I think that really helps!

Before I hopped on the scale, did I think I'd had a successful, God pleasing week?

Yes. The only questionable thing was those dark chocolate blueberries, but since I had a good outcome this week, and it did not trigger any sugar addictions and I did not eat them for the wrong reasons, I'm OK with having them only when I watch the SeaHawks games (but next time I'm only bringing a safe amount in a baggy and leaving the rest at home (we watch the games at our sons' apartments as a cheap date night!)

What were the measurable results?
The scale was friendly to me this week (you know, post-pre-monthly weight ins are always nice) and the scale showed that I lost about weight since last week. I wasn't writing down the weight each week and I just can't get it right, but overall I have now lost exactly 50 pounds since my first T-Tapp DVD arrived in August of 2012, and since I started my new spiritual journey of eating right to honor God in my life I have lost a total of 9 pounds! I am less than a pound from my lowest weight that I reached about a year ago.
So about measuring...I have kept very accurate records of measuring almost every time I was doing T-Tapp regularly. Since I started measuring I have lost a total of over 95 inches now! When I measure I measure my upper arms, pecs, chest, ribs, waist, abdomen, hips, upper thighs, lower thighs and calves. I decided early on that the best way to measure was to pull that measuring as tight as I possibly could so that I couldn't cheat the system (by pulling tighter the next week) and then it would be more accurate.

I measured for the first time (since last spring) just last week, and was so pleased with the progress this week, thanks to Aunti Flow effecting last week's measurements and being absent this week! This is why I measure! I "only" lost 2 pounds in the last week, but I lost 8 1/4 inches!!!!! That was very rewarding, especially since I had gained 4 1/4 inches from my measurements last spring. So even though I'm still a little over a pound heavier than I was a year ago, I am actually 5 inches smaller then I was then! That means more muscle/less fat! The scale is so not a picture of your actual health, but it easier to step on a scale than to take the time to measure yourself, but it's so worth it!!!!

And I do still plan to blog about my menus and meal plans and favorite recipes, but, again, this was just not the week!

Until next week - keep making good choices and turning to God instead of food to meet your needs and if the scale is not reflecting your hard work, then it's time to start using that tape measure instead!

Weight Loss Wednesday

2014-09-03T21:09:00.001-07:00

It's late, but I'm GOING TO POST THIS TODAY!

Did I overeat this week on any given day?
No, actually last Friday I got bad stomach virus and could hardly eat anything until Monday.

Did I move more and exercise regularly?
Not really - was too sick to even try most days! I did a workout on Thursday, and was able to do a few moves on Tuesday, but forgot today as I had to take Christy in for her swallow study (actually didn't happen due to a clerical error, so that's happening tomorrow morning instead!).

Do I feel lighter than I did at this time last week?
Most definitely - hollow described me most days this week, and most of today too, but a great dinner tonight gave me a very satisfied feeling (Alfredo Sauce + Chicken pieces + Dream Fields Angle Hair Pasta and lots of green beans with lots of butter!).

Did I eat in secret or out of anger/frustration/happiness?
Nope. but I had lots of reason for happiness this week, but I can't post about it yet.....I actually purchased veggies and fruit instead of chips and dip, and I just avoided the white buns and had a great meal!

Did I feel that, at any time, I ran to food instead of to God?

No. I did better, but I also had more challenges and did much better at praying about the challenges I was facing

Before I hopped on the scale, did I think I'd had a successful, God pleasing week?

Mostly - I did have one thing this week that was not "on plan" - when I was so super sick and trying to find ways to eat that would not cause my stomach to hurt and yet be satisfying, I resorted to have a cheesy roll on a white tortilla shell. But I am happy to report that I did not resort to saltines and ginger ale which is my normal "go to" for stomach illnesses. I mostly had whole wheat toast with butter and/or cream cheese (I was too weak to actually fix any food for three days).

On Monday morning I had lost 6 pounds from being sick, but as I expected on Tuesday I had gained 1 1/2 pound back. This morning I was very surprised to see that I had actually gone down another 2 pounds, putting me just 1 pound above my lowest weight last summer. Two more pounds and I will officially be at my lowest weight in 14 years! (14 years ago I used the Atkins diet to lose a lot of weight very quickly, but my healthy suffered greatly from that experience. I would have to lost another 46 pounds to reach and low weight I achieved at that time, but I was not exercising at all during that weight loss, so I might actually be thinner at a higher weight than that with the dense muscle that T-Tapp builds!

My goal has nothing to do with a weight, actually, but to do with size. I want to be able to fit in my wedding dress for our 30th wedding anniversary at the end of March....it will take a miracle, but it might happen! When I got married, I was 63 pounds lighter than I am now, but I know I will fit in the dress and yet weight more than I did then.

Oh - and I finally found my measuring tape today and will start measuring tomorrow, so next week I will include my weight loss and my measurement loss!

And I do still plan to blog about my menus and meal plans and favorite recipes, this was just not the week!

Until next week - keep making good choices and turning to God instead of food to meet your needs!

Weight Loss Wednesday!

2014-08-27T18:20:00.000-07:00

So it's been 17 days on this journey to grow closer to God and turn to Him to fill my spiritual and emotional needs, while eating healthy to nourish my body. To learn more about how God led me to this, please read my first Weight Loss Wednesday entry!

So here are the questions I will answer each week (far more important that actual weight lost!):

Did I overeat this week on any given day?
No, I did so well this week and have been completely over that nasty cold for a while now so I'm eating a little better. Looking forward to a less busy week this week so I can take time to make a few things like cookies and skinny chocolate bon bons!

Did I move more and exercise regularly?
Yes, but I did exercise as much as I wanted to, but got lots or exercise doing house work, yard clean up and cutting for my home business!

Do I feel lighter than I did at this time last week?
A little bit.

Did I eat in secret or out of anger/frustration/happiness?
Nope. I was concerned about the church's potluck picnic, but I was able to make good choices there too! Lots of salads and meatballs! Not positive about whether there was hidden sugars in those items, but I did the best I could at choosing foods that didn't look like they were sweetened!

Did I feel that, at any time, I ran to food instead of to God?

No, but just like last week, I definitely could have done better at turning to God when facing temptations. I added some more sticky notes to my bathroom and bedroom to help me memorize scripture to help me remember to do this in God's strength and not my own!

Before I hopped on the scale, did I think I'd had a successful, God pleasing week?
Yes. As of Saturday I had lost 4.8 pounds! But as of my weigh in yesterday, I had gained 1 pounds back - not from eating choices...not sure why. I have done more workouts this week and felt that I had a good week, so I didn't let that one pound back on bother me (much). So basically I'm at the same weight as I was last week. I have done measuring in the past and I know that measuring is a much better way to measure progress (I lost over 30 inches doing T-Tapp but had only lost 5 pounds at one point!), so I am planning to start measuring again now that I am past our post-adoption-home-visit (which was just a few hours ago and I think it went great!).

I have decided that I really need to do a blog post about what/how I eat and some of my favorite recipes, so keep an eye out for that - hoping to do that over the holiday weekend!

(This banner reflects my current progress, not where I was when this blog post was written)

Are You My Mommy?

2014-08-20T11:09:00.000-07:00

This precious little boy is still waiting for his forever family to find him!

Let me introduce you to Kristopher!! (not his real name, but it's close! Real names are not used to protect the children) I have met this little cutie several times as he was Christy's roommate from their earliest moments! He and Christy are very close in age, but very different in abilities. I have been told that he loved to try to get her to play with him, but she mostly ignore him. Sounds like the typical guy/girl relationship, right?

So Kristopher is in a very good group home. He is cared for by loving caretakers and has regular therapy. He is in a home with 9 other children with special needs. The time he spends in this group home will be great preparation for him going to his forever family, just as it did for Christy. He is allowed to roam around the home in his walker or sit in a bouncy seat. He also gets to interact with the other children in the home, aging from his age up to around 16 years of age when I was there. The other children all have special needs of some sort. The director of the orphanage has such a sweet heart for these children and just loves to see them get adopted. I found out recently that she even purchased a little kiddy pool last summer for the kids to enjoy, but only Christy truly loved it! These children also get to go outside everyday that it's nice enough and there is a little playground with a swing and a slide as well as a little walking area too. This is not the norm for children from this county, so he is blessed beyond measure to be here, but a forever family would be so much better for him! And once he's adopted another child can be saved out of the orphanages there where they are left in their cribs all day!

Kristopher has a page on Reece's Rainbow, but until he has a family committed to him, they can't accept donations according to the way things are done for orphans in this country.

Christy in her bed, Kristopher playing nearby - I wonder if he misses her?

Kristopher was born with some eye problems and a few physical issues, but most of them have been resolved. Recently he has surgery for his cataract and that has greatly improved his vision. He was a happy little guy most of the time that I saw him, except when he was having physical therapy - then he was this little drama king, pounding the mat with his little first and crying like "mercy! mercy!" when the therapists was only massaging his legs with oil! What a little manipulator! He is so smart, that he could tell when Christy was almost done with her physical therapy and started fussing and complaining just because he knew his turn was coming!

Anyway, this little guy would thrive in a loving home and I'm on a mission to find that home! His file is only available for a short time and then it goes back in the "drawer." PLEASE, if you blog or do social media, SHARE, SHARE, SHARE!

This is Christy and Kristopher just after they got transferred
to the wonderful group home in June of 2013."
He's grown so much and is so much happier!

Can you imagine finding out that you have been used by God to bring this little one into a loving family???

Matthew 25 :31 “But when the Son of Man comes in His glory, and all the angels with Him, then He will sit on His glorious throne. 32 All the nations will be gathered before Him; and He will separate them from one another, as the shepherd separates the sheep from the goats; 33 and He will put the sheep on His right, and the goats on the left.

34 “Then the King will say to those on His right, ‘Come, you who are blessed of My Father, inherit the kingdom prepared for you from the foundation of the world. 35 For I was hungry, and you gave Me something to eat; I was thirsty, and you gave Me something to drink; I was a stranger, and you invited Me in; 36 naked, and you clothed Me; I was sick, and you visited Me; I was in prison, and you came to Me.’ 37 Then the righteous will answer Him, ‘Lord, when did we see You hungry, and feed You, or thirsty, and give You something to drink? 38 And when did we see You a stranger, and invite You in, or naked, and clothe You? 39 When did we see You sick, or in prison, and come to You?’ 40 The King will answer and say to them, ‘Truly I say to you, to the extent that you did it to one of these brothers of Mine,

even the least of them, you did it to Me.’

Weight Loss Wednesday!

2014-08-20T10:25:00.002-07:00

So it's been 10 days on this journey to grow closer to God and turn to Him to fill my spiritual and emotional needs, while eating healthy to nourish my body. To learn more about how God led me to this, please read my first Weight Loss Wednesday entry!

So here are the questions I will answer each week (far more important that actual weight lost!):

Did I overeat this week on any given day?
No, in fact on a few days I think I under-ate, which can be problem as then I don't sleep well or I am weaker to temptation later in the day, so I'm going to work on that! I've been eating pretty much the Trim Healthy Mama way, but pretty much all "S" ("Satisfying" or "low carb") meals. I did choose fruit a few times as a treat, but always had protein with it.

Did I move more and exercise regularly?
Yes, even in spite of being very sick with a bad cold. I was able to get 3 workouts in since my last post. I tried the second part of T-Tapp's Total Workout and made it about 20 minutes in, but then I got sick and haven't tried again - hoping to try that again today!

Do I feel lighter than I did at this time last week?
Definitely, especially around my middle.

Did I eat in secret or out of anger/frustration/happiness?
Not once - even at my first grand-baby's baby shower (due in October)! I prayed ahead of time that I would be strong as I knew I would be distracted while there, and God gave me the grace to make the choice of eating the deviled eggs and fruit and not even desire the cake and punch!

I am so thankful for the grace God gave me this week, as I was very sick over the weekend, and I have always turned to "comfort foods" when I am sick, but I was able to continue eating healthy! He also gave me grace in that I have not been overly tempted even when my kids were baking up a storm this week - cookies, cakes, bread and fresh freezer jam....even when I was feeding things to the little girls, I didn't even lick my fingers! I can only say it is God's grace because I still so new at this that I often forgot to ask God for strength in the moment, but He gave it anyway!

Did I feel that, at any time, I ran to food instead of to God?
No, but I definitely could have done better at turning to God when facing temptations. I have some sticky notes up in my kitchen now to help me remember to do this!

Before I hopped on the scale, did I think I'd had a successful, God pleasing week?
Yes, I felt that I had an amazing week even though I faced lots of temptations and had such a tough time being sick for half of this week.

So how much did I lose this week? Well, since I started this journey 10 days ago, I have lost 3.7 pounds! I am happy with that, for sure!

New Beginnings - Weight Loss Wednesdays!

2014-08-13T13:26:00.001-07:00

This month marks the 2 year anniversary of my starting T-Tapp! I have NEVER EVER stuck with any exercise program for more than a few months, let alone 2 years! Sadly, I have not been totally consistent at doing it, but unlike any other exercise program I have tried, I have actually been able to return to T-Tapp after a break and enjoyed doing it again! Also, returning to it after even a month's break did not kill me! Somehow I do not lose all muscle tone gained even when taking a break!

It was just over a year ago that I discovered Trim Healthy Mama. I have eaten according to this plan off and on this year. I was completely committed to this plan for 5 months last summer/fall, but the holidays and homeschooling and traveling for our adoption and finances kept me from doing it full time since November. I have gone back and done it for a few weeks here and there, but something would come up and derail my best laid plans. I truly love how I feel with I'm eating the THM way, but it takes planning and in many cases preparation, which can be difficult if not impossible with my busy lifestyle! Plus, I just seem to easily return to my eating for the wrong reasons.

Between August of 2012 and October of 2013 I lost a total of 50 pounds. As of Monday, I had gained back 7 of those pounds. Not bad! But I have more to lose. I'm not sure how many pounds I need to lose (somewhere around 40 - 70 pounds - 70 pounds would be the weight I was at my wedding but I was not exercising at the time) in order to achieve my goal (to be able to wear my wedding dress!!), but the pounds don't really matter, I just want to be at a healthy weight and no saddle bags!

Food has always been something I turn to for just about anything. If I'm super happy or want to celebrate something, it's time for a treat, if I'm depressed I turn to sugar loaded treats, especially chocolate, I looked forward to the food at events almost as much as I looked forward to the events....you get the idea. Definitely a problem for me. I do have to say that I have rarely gained weight when I was not pregnant, and I would often lose weight between pregnancies, but being pregnant about every 2 years for 25 years makes one not exactly motivated to try to lose weight....only to get pregnant and gain it (and maybe more) back! And nursing didn't help me in the least - I never lost weight from nursing alone!

This past month Chessa Honey shared a book, Made to Crave: Satisfying Your Deepest Desire with God, Not Food, that was a huge part of her weight loss journey (she has love 85 pounds over the past 2 years through healthy eating and running). I've seen lots of women lose weight, lots of weight, but usually I won't pay attention to how they did it unless I see that they've lost and kept it off for years. So why would I look into what Chessa did to lose weight? Especially since a huge part of her weight loss was through running, something I could not do even if I wanted to due to the type of knee injury I sustained 2 1/2 years ago (hole in the cartilage on the weight bearing surface of my femur)??? Well, it was what she said about no longer eating to fulfill her needs. Turning her craving for food into a craving for God. THAT got my attention. I immediately ordered the book "Made to Crave" on Amazon!

So I am almost done with the book (I have one chapter left), and this past Monday I began a journey that I am hoping will be for the rest of my life. That of eating healthy for the sake of being healthy and going to God to fulfill my needs. This will be hard, very hard. Changing habits and seemingly natural reflexes will be something that I could not possibly do on my own. I don't like change. I don't like "hard," But sometimes I am up for "hard" if the carrot at the proverbial end of the stick is good enough. Growing closer to God and stronger in my faith is something I always desire. That is the carrot that works for me. While weight loss is something I greatly desire, it is not enough to keep me from eating that dessert when it's calling my name. Instant gratification wins out every time for me over long term goals. I'm weak that way.

Here are some of the things I'm committed to thinking when I am tempted to eat things that are not good for me:
"God has given me power over my food choices
"I was made for more than being stuck in a vicious cycle of defeat)
"How will I feel about this choice tomorrow morning?"
"Is this within the parameters of my FREEDOM?"

(These are taken from Made to Crave , some of them direct quotes, some of them my paraphrase)

So what, exactly will this eating healthy look like? For me this means avoiding refined carbs (sugar, while flour, white rice, potatoes etc), leaning on the fatter side of life (heavy whipping cream, cheeses, nuts, butter, coconut oil) and balances complex carbs/protein. It's a lot like Trim Healthy Mama, but I am also going to be eating some fruits too, and not freaking out about "S" meals and "E" meals...just eating fruit now and then as treats and trying to always have protein whenever I eat.

As far as exercising goes, I am working on learning the Total Workout from T-Tapp. The Basic Workout that I've been doing since last November is the first 15 minutes of the 40 minute Total Workout. So I'm planning to to The Basic Workout every other day, and on the other days do what I can out of the Total Work out, working up to learning it all. I do plan to take weekends off though!

So, two days into this journey I am looking for accountability. This is going to be hard. This will take a mental shift and knowing that I will have to answer to someone will be very helpful, especially in these early months when change is so hard and new habits have not gotten embedded in my brain! So I am going to, as much as it is possible, to post here on my blog once a week how it's going to me. I'm going to answer the following questions (these are from Made to Crave ):

Did I overeat this week on any given day?
Did I move more and exercise regularly?
Do I feel lighter than I did at this time last week?
Did I eat in secret or out of anger/frustration/happiness?
Did I feel that, at any time, I ran to food instead of to God?
Before I hopped on the scale, did I think I'd had a successful, God pleasing week?

Here are my answers for this week (well, the past two days):
No
Yes (Basic Workout on Mon and today, 15 minutes of Total Workout on Tuesday)
Yes (lost 1 1/2 pounds of water weight and my ankles prove that!)
No
No (but I wasn't very good at turning to Him to deal with temptation yet either)
Yes

I am looking for a partner in my journey. Someone to pray for me, and I pray for them, and to hold me accountable to these questions. Are you that someone? If you think you might want to partner with me, please email me and we'll see if it can work for both of us! I'm thinking a few emails/week or maybe even just one a week....

I love tickers - do you? I'm going to set my first goal at losing 54 more pounds from where I am now. That would make a total weight loss of 97 pounds (that sounds insane!). This should get me into my wedding dress, if not really close!

If I've inspired you to read the book, I'd love to hear from you. I am so excited to see where this journey takes me!

PS. The links in this blog post are such that if you purchase the book after using the link, I will earn a small commission, just wanted you to know!

Eight Weeks Home, Christy Update!

2014-07-12T18:49:00.000-07:00

Taking a nap at the park just last week!

I am shocked and surprised at how different her second month home has been from her first month home. Christy's first month home was mostly spent at home, where as the past 4 weeks have been insanely busy! I am also shocked at how badly I did at taking photos of Christy (or anyone around here for that matter!). I will have to do better!

Christy had an appointment with the ENT (Ear, Nose and Throat) specialist. He said that someday she'll probably need her tonsils and adenoids removed since she does snore often, but that she felt that she was on the small side and thought waiting was the better choice, but also said that we might consider getting a second opinion at Children's Hospital in Seattle. We talked it over, and due to her sinus congestion waking her more and more frequently as night, we feel that she needs to see the ENT at Children's. This referal has been made, but I have not gotten an appointment yet. After seeing the ENT her pediatrician wants her to also have a sleep study done.

Christy giving one of her goofy silly looks - this was taken yesterday

A couple days later Christy got to go with us to a local park to play with friends while the big people played volleybell. Christy did so very well there, but did NOT like the swing (you know the one that is like a bucket with holes). She was happy to hang out in her stroller or play on the grass. She did manage to get over into the sand, but this mean mommy took her out before she could eat any!

The next week was very busy for me (Esther had a pre-surgery appt at Seattle Children's) and our family (we had a stomach illness run through about half of the family, but just one or two people at a time). Christy had her first Physical Therapy evaluation that week too. We found out at that appointment that it would be best to wait to get braces for her legs (to limit the range of motion as her knee are double jointed) until after she has learned to crawl. As long as she is not weight bearing, she will not be damaging her knees. Once she has learned to crawl, then we will be getting her braces to wear when she is practicing/learning to walk. We have some exercises to do with her now to strengthen her legs and arms to prepare for crawling.

First time in the pool....

We had a busy Fourth of July weekend, with relative from out of state visiting in the area. Christy got to go the beach for the first time, but it was very windy and she didn't like it at all. She just wanted to be held. Then we went to a family reunion (Daryl's family) at another park and she did much better there, but like best to be in her stroller.

Last Tuesday we went to another park (Esther's Physical Therapist has recommended that we take her to parks frequently to help her built coordination and strength - and it's working!). Christy was tired when we arrived (it was lunch time) so she took a nap in her stroller - first time she's ever done that!. Someday I hope that she will begin to be able to explore parks, but right now it's really hard since she is limited to scooting around on her bum, and she puts everything in her mouth (a really bad combination since she has a very poor coughing ability so choking is a very real hazard for her - even here at home).

She Loves It!

Yesterday Christy was evaluated by our favorite speech therapists, Elaina. We were greeted with excited hugs as we haven't seen her in a long time (Esther and Dayton both have seen her in the past). Elaina confirmed that Christy does have some eating coordination issues and is also concerned with me that she is not gaining weight very well yet. She has given me some things to do with Christy during meals to increase her awareness of her mouth, work towards self feeding and learn to drink thickened water from a cup. I am also teaching her to sign "eat" and will work on saying "eat" and "water" to her when I am feeding her. Elaina really wants to see her regularly but has a long waiting list. They are going to try to get her on the schedule soon.

And Esther Loved having her in the pool!

Yesterday Christy experienced our pool for the first time and she loved it! She loves taking a bath, but I wasn't sure if she'd like the cooler water. But we've had an unusually warm summer so the pool isn't too bad. She will definitely be following in Esther's foot steps and become a fish. Carese, on the other hand wants nothing to o with the pool!

Christy has been staying at home more recently, but that is going to change as she has lots of appointments in the next few weeks - her dental evaluation at Children's. Physical Therapy once a week, plus our annual week long camping trip! Plus we will making more appointments for her dental work and seeing the ENT.

My baby girls, in PJs but not ready to go to bed quite yet!

Overall, Christy has been exceptionally healthy and has adjusted very well to our home and life. I have found that she enjoys shopping when she is in her stroller. Generally speaking, away from home her safe place is her stroller. At home she loves to explore and even enjoys spending time in the yard and swinging on the swing set (in HER swing of course). She gets lots of attention and enjoys play. Hearing her laugh is just THE BEST!

She also allows me to hold her hands together when I pray with her at betime - before she would resist and get mad at me! The funniest thing is that she LOVEs to get dressed and undressed. She giggles and giggles. I will have to videotape this somehow. She is getting very fast at scooting up to someone and raising her arm(s) to let them know she wants to get picked up. She will even chase you down if you are avoiding her (for fun, of course).

All tucked in and ready for bed!

She is a very content little girl. She rarely cries. She usually has more of an angry cry when she gets hurt or is in pain. It is a strange cry - almost animalistic. Its almost like a panic kind of cry. It is very sad to hear and really hard since we quite often do not know the cause - she just can't tell us. Even when we know the cause (like if we see her fall over and bump her head), it's hard because it's almost as if she doesn't understand how to receive comfort. But she is improving in this area somewhat, and I'm sure with time she will come to understand and receive comfort from us.

Christy and Carese are nearly identical in size. Six weeks ago we found out that they were less than 1/4 in different in height and less than 3 oz different in weight. Christy really has not grown noticeable yet so they are still like twins. They wear the same size clothes (you can notice that Carese is wearing the same PJS that Christy is wearing in one other photo). For a while, all the winter clothes were put on Christy, and the summer clothes on Carese. But as the weather has warmed up, I am dressing Christy in lighter clothes so they are being dressed more similarly now as a general rule.

And now for two videos! The first one was of Esther and Chrisy playing together, really for the first time. This has been the biggest change in Christy's life in the past month. Esther no long ignores her and actually loves to play with her. At random times we will find Esther sitting down next to Christy and just giving her hugs - it is so sweet!

The second video is ground breaking stuff! Christy is slowly but surely gaining more use of her right leg/foot and arm/hand! In the last video, you will see her use her right hand/arm to shake a rattle! We did have to put the rattle in her hand, but she kept it and moved it enough to create sound, and she knew she was doing it! This is miraculous!

Young Living Lemon Essential Oil Give Away!!!

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Young Living's Lemon Essential Oils is such a versatile oil! It work for health issues, emotional issues, cleaning problems and also is a great flavor to add to foods!

******See This Blog Post for the Give Away!*******

I have used Young Living's Lemon Essential Oil in so many ways, and I have lots of more ways I want to try using it! To date, and this is not a complete list, I have used this as an air purifier, food additive, drink enhancer, sore throat calming, cleaning aid and just to take a goo whiff as it smells so good and can uplift your spirits and give you an energy boost just that quick!

Now that I've researched this mighty little oil, I'm going to use it in so many other ways!

To learn more about this amazing oil and tons of ways to use it to enhance your life and improve your health, AND enter to win a bottle of it, check my full blog post HERE

My Newest Blog/Business - Scents & Scentsibility, Young Living Oils

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Peace & Calming has been my favorite, and I'm on my 4th bottle!
It helps my little settle into bed at night, and helps me to calm down
when I have a busy or stressful day!

I have recently begun to take my use of Young Living Essential Oils more seriously! I have been using them for 2 1/2 years now, but have pretty much kept that to myself. But that changed. I have begun experiencing so many ways that these oils have improved my health and dealt with illnesses and cleaning problems and even made some of my foods/drinks taste better!

Panaway is my "go to" for all kinds of pain plus headaches too!

I have started my new business by launching the Scents & Scentsibility Facebook Group (please join!) and also a blog, Scents & Scentsibility, Young Living Oils! With only a few weeks effort, I have already started getting people involved, helped others with using oils in their home, and best of all I have started to get commission checks!

Purification is used daily in my home for insect bites,
insect repellentbee stings, cuts and scrapes, infections, an air purifier and more!

On a recent blog post, Why Young Living Oils, Aren't They All the Same?, I wrote all about why I use Young Living Oils, comparing them to those you get at your local store, as well as why Young Living is a company you can trust and why their oils are the best and purest - they are the number one selling essential oils in the US! It is a thriving and growing company that produces the brand of essential oils that more of my friends that I can even name off the top of my head are already using (and starting their own businesses too)!

Valor is my newest favorite! It helps me "take on the day"
and tackle the mounds of work I face everyday.
With a cup of coffee and some Valor,
There's nothing I can't accomplish!
At least I like to think that way.

You don't have to start a business to use these - I didn't....for 2 years that is. But you just need to go to my blog post all about this and check our my blog and FB group and you'll see why I totally am excited about this new development!

I use Thieves for so many things - laundry, cleaning counters,
hand sanitizing, killing germs in the air, killing germs on surfaces
when we traveland it just plain smells wonderful!
I use Thieves Hand Sanitizer andThieves Toothpaste too and love both!

Everyday I'm learning more, and sharing what I learn, and finding ways to use the oils in our home so we can stop using over-the-counter medications and improve our health and have a healthier home!

Here's some fun graphics I posted just today - happy weekend and See you over there!